CM English
CM English
CM English
Communications Manual
2006 ALS Society of Canada
ALS Society of Canada 265 Yorkland Blvd., Suite 300 Toronto, Ontario M2J 1S5 Toll Free: 1 800 267-4257 Phone: 416 497-2267 Fax: 416 497-1256 http://www.als.ca E-mail: [email protected] Editor: Bobbi Greenberg, Director of Communications Cover and text design: Pass It On Communications
Ballpen closeup istockphoto.com/Andreas Herpens blue cornflower ELEN - FOTOLIA cornflowers istockphoto/Monika Wisniewska
Cover photographs:
Table of Contents
Section 1 Section 2 Section 3 Section 4 Section 5 Section 6 Section 7 Section 8 Section 9 Section 10
notes
Introduction ..........................................................1 Volunteers ............................................................9 Media Relations ....................................................11 ALS Awareness Month .............................................41 Making Presentations..............................................49 Public Service Announcements and Print Ads .................55
Resources ...........................................................83
Communications Manual
Table of Contents
Introduction
We are constantly challenged with a growing number of people with ALS to maintain our priorities. Client and caregiver support come before all else. After that, if time and resources are available, we worry about public awareness. Its the job of ALS Canada, from our perspective, to raise awareness of the illness and funds for research.
In this section ALS and public awareness: The challenge Public awareness Goals, objectives, strategies Getting started Purpose of the Communications Manual The message Audiences and messages Educating ourselves
Section 1
Public awareness
Media relations and public awareness work are too important to overlook. At the National level, the ALS Society of Canada is well positioned in many areas, including promotion of our understanding of the disease and of the need for research funding. But the organization cant mobilize local resources nearly as effectively as someone within that community. It is those on the spot who can assess and access whatever resources the community has to offer. And stories about a local person
Communications Manual Section 1 1
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with ALS in local papers or on local radio, news items in company newsletters, and speeches to local service clubs and community groups are effective ways of drawing attention to the disease and the organization.
Communications objectives
Communicate the specific messages of the ALS Society with each of its audiences, both internal and external Increase recognition of ALS and the ALS Society of Canada with the wider public. Hone and deepen our image and brand through new strategic initiatives Support awareness activities nationally and locally, building on the momentum that is growing as a result of local efforts Attract donors and volunteers to the work of the Society
Communications strategies
Build corporate identity to increase recognition of the ALS acronym Strengthen existing communications tools and create new ones to meet the needs of our internal and external audiences With corporate partnerships, gain wider distribution of additional awareness tools: print and video PSAs, media and transit advertising, etc. Offer communications support to programs like the WALK for ALS, June ALS awareness month, March of Faces, and other awareness activities
Getting started
This manual is intended to provide guidance to ALS Society volunteers. With the correct tools and some experience, volunteers will be able to increase visibility in
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their communities and promote our common cause. It is intended as a toolkit and a stimulant to your own creativity in the awareness challenge. As well as advice and information, it contains resources from ALS Canada, which are also available on our web site (www.als.ca) and are updated regularly.
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The message
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Policy makers at the federal, provincial and local levels General public
About ALS
Fact ALS is a rapidly progressive and fatal neurological disease ALS can strike anyone, regardless of age, sex or ethnic origin Two to three Canadians a day die of ALS Approximately 3,000 Canadians currently live with ALS ALS affects the whole family ALS is costly economically, physically and emotionally
Tag lines
Quote ALS. Three letters that change peoples lives. FOREVER. What would you do, while you still could?
We collaborate with partner units to help provide support We raise awareness about the disease We advocate on behalf of and with people affected by ALS
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We can provide sources for larger issues that relate to ALS homecare, health-care reform, stem cell research etc.
Educating Ourselves
As participants in this conversation with the public, we need to be able to answer these basic questions. Education is the first task in any increased awareness. Our message is more than just facts and scientific data. It is about drawing people into a community of concern. The society in which we live is highly visual. In thinking about the ALS message, we also have to visualize it if we want to make the conversation more effective. In an organization as complex as the ALS Society family, it is important to clarify which area is responsible for what task. The chart below shows how Partner Units and the ALS Society of Canada have agreed to divide the tasks in our communications program. The media newspapers, magazines, radio and television help us to get our story out. In seeking to raise visibility, we have to focus on the needs of the person who is encountering ALS for the first time: as a person with an ALS diagnosis, as a family member, as a possible donor, even as a media person. We have agreed to divide the communications/public awareness roles between the ALS Society of Canada and local partner units. The specific roles are outlined in this chart.
Public awareness/communication
ALS Society of Canada
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Unit
Develops an annual report for the public and provides Units with bulk copies for distribution Manages crisis communications process to deal with any issue that affects more than one Unit; offers support in crisis communications to Units Enhances and utilizes relations for the benefit of ALS Societies with media Develops material for use by Units, after consultation and involvement with the Units Produces and distributes news releases on key Canada-wide topics Produces appropriate communication tools newsletter/web site/list serve/etc. and distributes to Units, media, people with ALS, donors, etc. Establishes and implements a strategic public awareness and communications plan in conjunction with Units Involves stakeholders in the development of awareness materials Provides materials to Units at cost or less Responds to public inquiries with pertinent information and compassion; provides no medical advice Co-ordinates communications strategies on an annual basis
Develops an annual report for the public; sends partners copies Responds to public inquiries with pertinent information and compassion; provides no medical advice Informs ALS Canada in confidence of issues which may lead to potentially damaging publicity/legal action May have a Unit newsletter Provides input to awareness material development Ensures that logo and corporate identity are being used properly Provides materials to Chapters and/or Support Groups at cost or less Co-ordinates communications strategies on an annual basis
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Section 1
Volunteers
Volunteers play a vital role in enabling the ALS Society to mount communications activities. For instance, volunteers make presentations to community groups, arrange displays at health fairs, and manage media relations programs. This section of our Manual provides some guidance for how volunteers can maximize their involvement in a media relations program.
In this section Media relations working group Goals for the working group Next steps
Section 2
Purchase a binder and put copies of all press releases you issue to the media in it Keep lists of media contacts (divided by print, radio and television) Maintain archival files of promotional material developed by the local ALS Society Maintain copies of all local media coverage of ALS Maintain files of materials received from the ALS Society of Canada and the ALS Unit Annually update the lists of local media contacts
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Maintain an updated profile of the local ALS Society; keep extra copies for distribution Keep contacts with client groups Develop an annual calendar with events and media deadlines Develop a bio for your Unit President and Executive Director Develop a critical path for special events and assign responsibilities. Have a chair and co-chair for sub-committees so the person next in line will be able to identify specific promotional tasks and recruit volunteers to take them on For reference, keep copies of Coast to Coast (the ALS Canada newsletter), Research News (ALS Canadas research newsletter) and The Northern Neuron (ALS Canadas research publication)
If this structure is being put in place for the first time, consider holding a one-time consultation to help focus staff and volunteers on media work. Invitees could include: Local staff and volunteers who have worked on media Representatives of other partner health organizations Media personnel: e.g., a reporter who writes on health issues in a local newspaper, a public service announcement director from a local radio station, a producer from a television station People with ALS Representatives of the Unit and ALS Society of Canada office The goal of the consultation is to raise awareness within the local organization not to make specific plans. The following questions might guide the discussion: What is the present media profile of ALS in this community? Give us a snapshot How can the local Society improve its media profile? How do local activities connect with the national strategy of the ALS Society of Canada? Encourage participants to tell success stories and brainstorm fresh strategies. Make sure to take detailed notes so that examples and suggestions can be followed up, especially if particular names and organizations come up. The notes from this consultation will help the Working Group assess and prioritize its work with the media.
Next steps
Have your media relations working group review the Media Relations section of this Communications Manual that contains guidelines for planning and implementing an effective media relations program.
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Media Relations
The Media Relations section of this Manual includes a wealth of information. After you have reviewed this section, you will have the tools you need to implement an effective Media Relations program for your Unit.
In this section Creating a media plan Effective media coverage of ALS means strong local coverage How to be newsworthy The Media: An overview Television Radio Magazines Media relations: The process Develop a calendar Build your media list Giving interviews Media tips Choosing spokespeople Media training Writing for the media Working with the formats News/press releases Fact sheets Media Advisories Other media opportunities Media matters Working with the media Interview tips Blooper brigade
Section 3
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We recommend the development of a plan for each segment of the communications activity.
media relations training and substantial experience as communicators, lament the difficulty of placing stories about ALS. Several major stories about ALS and people with ALS have appeared in the national media recently. Despite these successes, the basic challenge remains. Media outlets get inundated, and ALS is not news. It is hard to compete, said one seasoned communicator in our ranks.
Fact The media is most likely to pick up on a health story when: there is a medical or scientific breakthrough such as a dramatic increase in its incidence a new drug/therapy for ALS or a celebrity has contracted it
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Since Sue Rodriguezs highly publicized fights for the right to end her battle with ALS through assisted suicide, there have been few ALS-related events that a Canadian editor or producer would consider newsworthy on a busy day.
How to be newsworthy
To get coverage, you must be newsworthy. Being newsworthy means you meet one of the medias three objectives. You inform, educate or entertain. Your story must also be timely. Before pursuing a story, editors, reporters and producers ask themselves, why would our readers, viewers or listeners be interested in this now?
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Units annual WALK for ALS is an example of a newsworthy event. The media do a story about the event. Check to see who would like to be interviewed about why they are participating in the Walk. If you need assistance with media training, contact the national office.
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for public awareness. However, it is also both the most expensive and the most competitive medium. Television stations are either affiliates of a network such as the CBC or independents such as CITY-TV in Toronto or AChannel in Alberta. Affiliates are part of a national network with substantial resources. A broadcast segment, which is developed by the local station, may be shown on the national network. Independent stations, on the other hand, usually have a mandate to promote local news and issues. There has also been a dramatic development of lifestyle-related cable programming such as the LIFE cable network. Remember also that neighbouring American stations increasingly aim to serve their Canadian viewers. Health stories cross boundaries easily.
Fact Health-related stories on television tend to fall into two categories: News stories: e.g., a dramatic breakthrough in research, a celebrity with the disease, a crisis or scandal in the health organization. These stories will be accompanied by topical footage and short interviews with key players in the story Background stories: e.g., overviews of medical research, an ordinary persons account, or inspirational stories of community experiences. These will almost always be profile segments that use personal interviews (the human interest angle) as a means of talking about the issue
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Key people
It helps to know the players in TV and the role they play, for instance: Planning editor: Reviews all news information received prior to an event, and often arranges for an interview to take place before the event. Most network affiliates have a planning editor but only some independent stations do Assignment editor: Determines what stories will be covered on a particular day. There may be several who work on a rotating basis Reporter: Actually covers the story. Reporters usually work on assignments and cover stories assigned by the assignment editor, but may also suggest ideas Producer: Schedules interviews for talk show hosts Researcher: Develops background information on a story for the producer and host
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Radio
With the exception of the CBC, most radio stations are independent in Canada. Local profiles are important to the independents and health-related stories are broadcast on these stations more frequently than on network television.
Fact Health-related stories have more opportunities on radio than on television. News stories: As on television, are topical and may be shaped by circumstances beyond the control of the health organization Background stories: Are nearly always an interview with a person with the disease, or with an activist or professional in the field
The rise of so-called talk-radio has dramatically opened up new possibilities for access to public forums on health issues. Over the next few years there will be an increase in the number of radio stations that are only broadcast on the Internet. Many of these may well be specialty channels, much like cable television channels.
Key people
The key people in radio are: News director: Determines the news items for a particular day, schedules interviews and sometimes conducts them Public service director: Decides which public service announcements will be aired Producer: Schedules interviews for talk show hosts Researcher: Develops background information on a story for the producer and host
Magazines
Print media once dominant in mass communication have been largely superseded by the broadcast media. Although readership of national newspapers and magazines has declined, the appearance of local and even neighbourhood newspapers provides a valuable tool to community-based health organizations. There has also been a growth in the number of specialty and professional magazines, usually published monthly or quarterly.
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Fact Health-related stories can appear in a number of forms: News stories: These are topical and dramatic. National papers may also include your local story in its national edition Background articles and profiles: Many newspapers have a reporter or editor who looks after health-related stories. As with television and radio, these articles will tend to be based on interviews. The articles may have to wait until there is a soft news day and there is space in the publication. A rapidly emerging news story will often bump a background article
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Key people
The key people in magazines include: Managing editor: In charge of all editorial activities of a publication. You may send news releases and information kits to the managing editor of a small community newspaper or small magazine, but it will not be useful when youre dealing with larger publications Editor: Assigns and edits others stories. Trade magazines tend to have one editor who oversees all topics covered in the publication. Newspapers, consumer and business magazines often have editors with responsibility for specific kinds of stories and specific topics, such as features, departments and health and medicine Writer, reporter, columnist: Research and write stories. Columnists generally have a specific area of coverage; on larger publications, writers and reporters generally do as well. Their stories may be assigned by an editor or self-generated
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timate the lead time you will need to encourage or place a larger article in a newspaper or arrange for an interview with a radio or television station.
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Search the Internet: Search under such key words as ALS and health issues to see where ALS is being discussed. There is an explosion of information on the Internet, usually in the form of web sites dedicated to specific issues. People faced with health questions are increasingly turning to the Internet to find information about research and available resources. Always follow the links at an interesting web site to see if there are other sites that might provide informational and promotional opportunities. Keep a list of the URL addresses of these sites. Remember that most word-processing programs automatically turn an e-mail address into an immediate link button.
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Electronic Media: TV and radio Name: Newspaper, magazine, etc Ridings: Federal, provincial Other Districts: Regional, municipal Frequency: Times of broadcast Address: Address, city, postal code Phone: Fax: Email:
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Print media: Newspapers and magazines Name: Newspaper, magazine, etc. Ridings: Federal, provincial Other Districts: Regional, municipal Frequency: When is it published? Address: Address, City, Postal Code Phone: Fax: Email: Contact: Name and title of contact person Web site: URL address Published: Specific days & dates Deadlines: Days & times Circulation: Area Notes: History of contacts and past stories
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Contact: Name and title of contact person Web site: URL address Local programs: Names, days & times of programs Deadlines: Suggested lead times Newsroom: Contacts Notes: History of contacts and past stories
Giving interviews
Media tips
Checklist
When a reporter calls, drop everything and look after his/her request Ensure that your media spokespeople go through media training Do mock interviews with your key spokespeople Develop your key messages and ensure that your spokespeople are familiar with them Always ask the reporter what the article is about, to ensure that you give the best spokesperson possible Check with your volunteers to see who has media experience and keep a roster Track your media calls and issue reports to your management team and board And most importantly, make sure when you issue a news release that you actually have news is it an opening of a new office, your annual conference and you have high-profile speakers, or is it a human interest story (e.g., one of your members is organizing a fundraising concert with the proceeds going to your local society and the invited guests include some of the top Canadian musicians)
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A single appearance on TV, for example, gets your message across to thousands of people
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Choosing spokespeople
Interviews are challenging events that need careful preparation. Compile a list of people who are willing and capable of being interviewed effectively about ALS. Check with these people to ensure they are willing to be on-call to speak on behalf of the local ALS Society. They will be your front-line troops for the Society so they need to be carefully selected. Your spokespeople might include: President/Executive Director of your Unit Person living with ALS who is comfortable talking about his/her personal experience Family member/colleague who has experienced ALS in the family/community Doctor who has experience with ALS and can speak knowledgeably about it Nurse/palliative care professional who knows the needs of the person with ALS Celebrity/well-known person who can speak with personal conviction Volunteer who speaks enthusiastically about the work of the local ALS Society Unit President of the local Unit President & CEO of ALS Canada Refer to the Privacy Policy in Section 10, Resources. ALS is a disease that crosses all categories of people. Aim to ask people who, in addition to their expertise and experience, reflect the diversity of Canadian society in age, gender, ethnic and racial background, economic and educational background. As you orient these people, make it clear that public comments about ALS need to be factual. In many cases, the person will be speaking as an individual and their opinions will not necessarily represent the ALS Societys policies or positions. These people need to know well in advance that they could be called at short notice to speak on behalf of the Society. Dont assume that you will be the first contact of the media. If your spokespeople have been interviewed previously, the media often will call them first. If your spokespeople are conscientious, they will anticipate what they might say when interviewed. Connect regularly to keep them briefed about ALS and the local Society.
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notes
Much of this material can be sent through regular e-mail distribution or mailed to your spokespeople. These people may want to keep informal contact with each other so that they can support one another. A social event during ALS Month is a good way of supporting and thanking your spokespeople for their work.
Media training
This manual contains a number of tips that will assist you to be interviewed or to provide background information to reporters. However, it is worth considering having some media training for you, your experts and your spokespeople before embarking on a media relations campaign. It is important for everyone involved to review the resource material and consider how to respond to a variety of types of questions. In addition, provide spokespeople with a copy of the Media Relations section of this Communications Manual for reference.
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Be prepared for various interview formats: Telephone Face-to-face at home, office or a studio E-mail Telephone interviews may be taped and edited for radio or may even be live calls. Broadcast interviews will be taped or filmed. A researcher may call in advance to brief the spokesperson on protocol, discuss what to wear, and prepare them by running through some of the questions and answers. If a person with ALS or family member has agreed to give an interview, ask the journalist to keep it brief. You may also wish to help the person living with ALS or family member anticipate and prepare for the kinds of personal questions about the physical and psychological aspects of the disease that a journalist is likely to ask. The person living with ALS or family member should know that it is perfectly fair to ask for a time out if they become tired or overwhelmed by emotions during the interview. The ALS contact may want to attend the interview to give moral support. We suggest that the spokesperson aim to focus on no more than three messages to convey to the media. Some sample issues are: What What What What What is the is the funds is the is the nature of the disease? purpose of the ALS Society? are needed for research and services for those affected by ALS? need for volunteer assistance? latest research news?
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These issues will help to clarify and focus what the spokesperson might like to say. Be prepared to answer probing questions journalists may ask, for instance: Ive never heard of ALS. What is it? What is the typical progression of the disease? What kinds of immediate relief are there for the person with ALS? How many people die each year from ALS? How many Canadians have ALS? What is the ALS Society position on assisted suicide? Have you ever considered assisted suicide? Who was Lou Gehrig? What did the Sue Rodriguez story tell us about ALS? What is the government doing to help people with ALS? Not all interviews will be conducted in such depth. An interview about a social or community event may be much lighter in tone:
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What does the cornflower symbolize? How many people will be attending the event? Is this the first year that the event is being held? If so, why are you holding this event? Where will the funds go? (Research, client services) How long has the ALS Society been active in this community? Whats happening at this event? Who will be there? How can people learn more about ALS?
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News/Press releases
These are the most common and direct way of getting information in front of an editor. They are particularly useful for flagging the media to a significant announcement or upcoming event, or offering your organizations local angle response to a broader development or government announcement. The media is always after a good story. Achieve third party endorsement from the media and youve landed a goldmine. But before you approach the media, ask yourself, have you got a STORY to tell? If you think you do, answer the 5Ws of journalism the Who, What, Where, When, Why, and How then write a news release. Writing a news release involves an awareness of the basic news release format. Start with an attention-grabbing headline. Answer as many of the 5Ws as you can in the first paragraph. Answer the remainder in the next. Find someone in senior management to provide a quote that supports your story. The balance of your news release should be background information or information that backs up the 5Ws you introduced at the beginning of your release. Finally, provide a short history of your organization. Include contact names and phone numbers so that interested media people can talk to someone from your organization. Marshal McLuhan, the world-renowned authority on Communications stated that, the Medium is the Message. Today, I ask you to consider the Message as the Medium for success! Planning what you say, who you say it to, and when and how to say it, is what makes the difference between a good marketing campaign and a great one. A topical story will be event and people-driven. If, during ALS Month, you have a prominent celebrity or an unusual visual aspect (e.g., a fundraising run for seniors), it will be attractive as a lead story. In print that will mean a story, perhaps with a longer article farther back in the newspaper or magazine. Broadcast media might use it as their local lead story or as a hook to keep viewers after the commercial. A background article will often appear on a soft news day when there is not much competition from topical news stories and there is space available. Background articles may sit in a file for a while until time and space permit publication. Background articles will place ALS Canada in direct competition with other health organizations. In general, the media will spread their background articles in a pattern across the year: the spring is a high-demand time for health stories.
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your release in three main sections: Lead: The first sentence will capture the interest of the reader, listener or viewer with strong visual images and a focus on people. Imagine that your first sentence is the only part of your release that will be used. Make sure the lead covers the five Ws and the How. Provide the lead with a headline of three to five words you want to control the focus. Put a maximum of three sentences in the lead paragraph. If you have photographs or video footage, write your lead to those images. A photo will increase the likelihood of your story being covered Details: If the readers or viewers interest is piqued by the headline and lead, he/she will want to know more details about the story. Expand the 5Ws above, always putting the most interesting information first. These details may be explanatory material about ALS or more details about the news story. Quotations from participants are frequently used. Break this material down into three sentence paragraphs Background information: The final section will be material that provides factual information about ALS and the Society, locally, nationally and internationally. This material can be repeated in other news releases, but should be updated annually
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Rank the five Ws in order of interest and provide more information on each. Always focus on the visual and the people aspects of the details. Use quotations. Describe activities as short visual narratives: Capture the personality or mood of the participants Briefly tell what ALS is Briefly describe the work of the local ALS Society Write three to five sentences that make the story news.
Checklist
notes
Who will make the event newsworthy? A celebrity A politician Local personalities A high-profile person living with ALS A particular group from the community What will make the event newsworthy? A new type of event or activity An entertaining or moving atmosphere A regular community event Issues that have potential public or community impact Results of a study, research, or program An important human interest story that sheds light on your issues When will the event occur? As part of ALS Month As part of a regular community event WALK for ALS Hike 4 ALS During a holiday Where will the event occur? In a new and interesting location In a regularly used venue Will the location look different Why will the event occur? Fundraiser Awareness event Volunteer appreciation event Memorial or thanksgiving Advocacy event
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Some style suggestions for the details: Sentences can be slightly longer than in the lead, but should still sound conversational in tone Break the details section into short paragraphs, each with a subheading Always write with the general public in mind. The reader or viewer wants to be informed or entertained by stories that relate to them personally. They are not particularly interested in the internal operations of the local Society Make sure that the abbreviation ALS appears two or three times in the detail section Give general background information: Write five to 10 sentences that give general background information about ALS and the local Society. Provide further information to answer questions about the disease and the local Society. This material might be developed as a series of bullets that could stay in a master file and be used selectively for various news releases. Provide contact people with phone/cell numbers and e-mail addresses. Give the ALS Canada web site address (www.als.ca). Some style suggestions for the background: This is the place for technical and medical terminology. Make sure that unfamiliar terms are explained briefly Keep this section factual Keep the paragraphs independent so that they can be cut without the editor having to rewrite the piece
Fact sheets
ALS Canada has developed a selection of fact sheets that provide an overview of information about the disease, statistics and issues. Units may also want to develop fact sheets that outline the people, programs, and activities specific to that location.
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Fact Sheets are available on our web site, www.als.ca. There are fact sheets covering frequently asked questions, issues, research, how ALS, MS & MD differ, alternative/complementary treatments, statistics and information about the Society.
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Media/News kits
A media kit is often prepared for major events such as ALS Month and for a particular fundraising activity. A media kit is a package of information designed specifically for the media. It could include:
Checklist News release Fact sheet on the issue History of the issue or background about the event Quotes or comments by experts and contact details Charts, visuals or photographs Brief biography on your spokesperson/s One-page description about the organization
It provides detailed issue information to the editors, producers and reporters of the media. It gives you an opportunity to educate the media about your issue. Distribute news kits to all the media who attend a news conference; provide kits to individuals who attend an editorial board meeting; send kits to reporters who express interest when you make your media follow-up phone calls; or send them to media contacts before a major event such as ALS Month or a fundraising campaign.
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Issue news releases FOR IMMEDIATE RELEASE which means that the material can be used on receipt or, if there is a specific day for the release. Fact sheets do not need this notation If your copy runs more than one page, type more after the last line of each page Put the page number at the top of each page after the first At the end of the release, type 30- under the last line (an old telegraph signal that meant the message was completed) Follow local media guidelines for abbreviations and capitalization. Some newspapers have a style sheet for reference. We use the CP Stylebook Keep copies of all releases and attachments
Using pictures
Check with the editor for special requirements for pictures Dont write on the photograph Attach a caption to each photo with information and identification details
Distribution
Fax, e-mail, hand-deliver or courier the news releases.
Follow-up
Always track the progress of your release through the media. If the material is used, follow-up with the publication or broadcast with a letter of thanks.
Media advisories
A media advisory is a one-page communication used to advise the media that you have an upcoming event you that would like them to cover. An advisory provides enough information to get a reporter interested in reporting on your event, or speaking to your spokesperson. Unlike a media release, an advisory does not reveal the whole story, so reporters still feel the need to attend the event. Provide just a nugget of information to pique the reporters curiosity. You can also use an advisory to alert editors and producers that your organizations spokespeople are prepared to respond to a particular issue in the news. For instance, if there is a provincial ministry budget cut that affects your client base, send an advisory with a brief sentence on your organizations position on the funding situation and offer your spokesperson for comment via live interviews on radio
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and television. This is also known as piggybacking and is an effective and relatively easy way to ensure that your voice is heard in a public debate. Send your media advisory one week before your event so reporters can put it on their calendars ahead of time. Or send it out immediately after (same day or day after) an announcement, event or media story alerting the media to your preparedness to comment on a particular issue. Include the times, dates, contact numbers, and brief biographies of spokespeople on your advisory. Always think about the people who will cover the type of event you are holding and direct your advisory to them. Read your local paper to identify the specific reporters who are covering your issue. If you still are uncertain, call the newspapers, TV and radio stations to find out who the news and/or assignment editors are. Those people are responsible for assigning all news stories. The best way to deliver a media advisory is by fax, e-mail or hand delivery. Do not send lengthy attachments to reporters; send your advisory in the body of a message. Keep the advisory short, i.e., one page maximum. Include a catchy headline, a contact name and a phone and cell numbers at the bottom of the page. Print your advisory on letterhead. Use the notation -30- to indicate the end. Special TV tip: Broadcasters need to know if there will be a good visual at your event. If you are publicizing a field trip or other hands-on activity, make this clear in your release in a note near the bottom of the page.
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Media calls
A media call is a phone call to a reporter, editor or producer to pitch a story idea or to follow-up on a news release. There are a number of strategies to use when making media calls. Some organizations call reporters, columnists and editors from time to time to update them on relevant changes in the issues the organization addresses. Others only call when they are actively promoting a story. Even if you dont have a story to pitch, reporters who are interested in your issue will appreciate being kept up-to-date on changes. This contact will help you build your credibility as an information source.
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At the very least, every time you send a news release, follow-up with a quick call to the editor to see if he/she is interested in the story, if you can add any more details, or to arrange an interview for a reporter. This can turn a story idea into a story. Be sure to find out if the timing of your call is good or determine what time would be better.
Editorial boards
Most daily newspapers hold editorial board meetings in which their opinion writers and senior editors have topical discussions with politicians, community groups, or other organizations whose message is relevant to the community. Newspapers are selective about who gets an editorial board meeting. It comes down to whether the topic is relevant to the public, as opposed to just the party requesting an editorial board meeting, i.e., no commercial interests, and theyre not instant publicity sessions where a news story appears in the paper the next day.
Op-ed articles
A guest opinion piece that appears opposite the editorial pages of newspapers. Intended to let knowledgeable, outside voices address political or public policy issues in the news. If you have a topic for discussion that might interest the editor of your local paper, here is the process that you would follow: Send an outline of your idea to the editorial page editor via mail/fax Follow-up with a phone call Your pitch should illustrate that: you are addressing an issue currently in the news your article will add to the debate and be interesting to their readers you or your organization is a credible source of opinion on the topic A good resource on How to Write an Op-Ed, (English only) is available at http://aboutpublic relations.net/ucmelaina.htm
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notes
Media matters
Working with the media
Why work with the media? Show your Unit in a positive light Increase donations Increase awareness Get your Units message out. Through the media we reach not only the general public, but also government, community leaders and other key influencers as well
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Develop your media strategy: What do you hope to achieve by publicizing this information? Which audience are you trying to reach? Which media are you going after local or provincial Have an up-to-date media contact list What is your message? Explain the who, what, why, where, when and how of your issue. Include details such as funding issues, stats, background information in your series of messages Determine how you will deliver the messages news conference, editorial board meeting, news release, op-ed page offering, talk show, etc. Afterward, evaluate your results. Did your message get covered? Do you have a media monitoring service? Was the story to your liking? Why/not? What could you have done differently? Why develop key messages? To identify phrases/words that best represent the message an organization wants to project To improve your ability to reach your target audience To help you focus on whats really important Developing key messages: You need a core message supported by clear major points To determine key points about your topic, write down as many as you can think of, then combine and condense until you have three or four concise bullet points that capture the information your audience needs to know Think like your audience: What would your audience want/need to know about your organization/issue? Get to the point. Dont blur your key messages or crucial information by going on and on about unnecessary details
Interview tips
To accept/decline an interview, set a date and time for a call back Be prepared. Have backgrounders about your organization available, its senior management team, and all of its spokespeople ready with photos If you decline, provide a reason and alternate people to talk to. Leave the door open
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Questions you may be asked: Whats your main concern? Can you describe the situation at hand? How to start an answer: Start with a fact. Our research shows that What if you dont know what to say? If you dont know the answer, say so and promise to get back to the reporter (within a specific time period) with the information Correct any inaccurate information as quickly and diplomatically as possible. But position it as a clarification rather than putting reporters on the defensive with words like mistake or error. You may win a battle, but you will most certainly lose the war When things have gone wrong in your association, explain what you are doing to fix things in hopes of minimizing damage These are message opportunities: View interviews, editorial board meetings and other media encounters as opportunities to get your message out through the media. But accept that you have no control over the final product. If you want control, purchase an ad. Top interview NO NOs: Dont try to stop a story. If youre concerned about what may be written, offer clarification and perspective, and appeal to reason in an unemotional, factual way Never lie. Tell the truth even if it hurts. If you dont, it will come back to haunt you Answer the questions asked Never make a statement you cant back up. Theres nothing worse than to have an interviewer say, We checked and found just the opposite is true. Make your own statement, dont let anyone influence your agenda Avoid any statement that cannot be substantiated Dont tell reporters how to write their stories Facts, numbers and case studies strengthen your message and make you look aware and informed Closing slogan close with a motto or slogan that sums up why you do what you do, or why its important Dont delay in clarifying or correcting inaccurate stories
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Instead of saying...
Say...
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No comment. Dont blame us for this mess. It wasnt all that bad. Were not ignoring anyone.
I cant help you with that. Its not our fault. We didnt do it. I cant guarantee. I cant talk to you right now. Bridging:
Id be pleased to answer questions about Were working withwhose job it is to repair x/y/z. This was a serious situation and thats why were working to do x/y/z. We realize that there are some people who still are not satisfied. We ask them to keep in mind concerns such as x/y/z. I can help you with Were anxious to find out what happened. The situation resulted from this, this and this... to explain your case Were working to improve such and such. I can guarantee that there is a plan. Id be glad to talk you just as soon as I can.
Take control of the interview. Following a reporters question, bridge to what you want to talk about, i.e., Before I answer that question, let me explain our concerns/plans/situation etc. Let me give you an example. Dealing with hostile questions: Listen carefully, look directly at the reporter, and pause before answering Create time to think, ask person to restate the question to define or clarify a point that is unclear Do not bluff or lie Dont sound defensive. Explain what your organization has done, rather than defend what it has done Redefine the wording in negative trap questions, i.e., Why have you failed? In your answer dont repeat a word like failed. Use another approach If you dont know the answer, say so. Offer to get back to the reporter with the information at a mutually agreed upon time Offer assistance. If you cant help, refer reporter to someone who can If you dont want to answer a question, decline graciously, giving your reasons Prepare answers for best and worst questions you may be asked Dont let the reporter put words in your mouth or lead you into agreeing with his/her statements
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When youre asked negative questions: Dont become emotional, or angry, or defensive. Stay calm. Remember, you are in control. If you dont say something, it cant be used. If you are asked a question about something irrelevant to the issue, answer politely that was not what you understood the interview was about and indicate the subject matter you were told you would be discussing. Never repeat a negative sentence used by a reporter when you respond. You might be quoted as saying this negative phrase if the reporter is trying to support his/her angle. If a reporter asks you for your response to an exaggerated situation or position, be sure to say, NO, that is not correct. Continue then with what you know as the truth. Never guess or speculate if you dont know the facts. You risk your credibility and that of your association if you make wrong, hypothetical assertions. Watch to see if the reporter paraphrases your opinion inaccurately. Correct the inaccuracy immediately. Tell a reporter you would like to answer a question again if you were not pleased with your comments. Ask the reporter to read your quote back. Explain why you cant answer a question (i.e., its a personnel issue). Otherwise, no comment implies guilt, secrecy, or underhandness. Journalists will often stay silent so you can nervously babble on. Answer the question succinctly and end your response. Let the reporter worry about the silence.
Getting prepared
Looking good on TV Wear professional business attire Hair neatly combed (go to the hairdresser) Avoid narrow stripes, bold prints, plaids or busy clothing around your shoulders and neckline. Viewers will be distracted from your comments by your clothing White shirts cause a glare on TV. Off-white is better Good choice: navy, black, or brown jackets with a solid coloured shirt Wear minimal jewellery Wear clothes that hide or flatter your shape Clean up your desk/office Body image: Maintain eye contact with the interviewer Dont look at camera Smile Dont shift around
38 ALS Society of Canada
Sit on your suit jacket so it doesnt ride up Watch hand movements or placement Nothing in your hands Dont jangle change in your pockets
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Exercises
Blooper brigade
Use the words on the right-hand side vs. the left-hand side. Your writing and speaking abilities will be much clearer.
Instead of saying... Say...
In order to facilitate a solution... For the purpose of... In connection with... In reference to... Notwithstanding the fact that... Pursuant to our agreement... We are not in a position to... In the month of June... In the event that... Anyways... Firstly, secondly,
Communications Manual Section 3
To solve the problem, suggest... For... About... About... Although... As we agreed... We are unable to... In June... If... Anyway... First, second,
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At the present time... On condition that... In regard to... In accordance with... A lot of... Very Irregardless... The reason is because... Everywhere With the exception of...
Now... If... About... By... Many... Do not use its overused Do not use its a pretentious lengthening of regardless The reason is that... or, Because... Do not use widespread Except...
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Section 4
Awareness activities
Raising public awareness is tied to the goals and objectives of the ALS Society. Events and activities must contain a clear message that we want to send to our target audiences. (Refer to key messages in the Section 1, Introduction.) Even something as simple as wearing the cornflower provides an opportunity to increase visibility because it causes people to ask a question; the answer promotes the ALS message. Plan to stage events that maximize its visual and community potential. Activities will be aimed at small and large groups of people. They will reach out to groups directly or through the media. The media likes events that have a strong visual impact, events that tell community stories. You are more likely to attract a local television reporter looking for a camera shot for the evening news, or a newspaper photographer looking for a front-page photo if you plan to make your event interesting.
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flower found throughout Canada. Like the cornflower, people with ALS show remarkable strength in coping with a devastating disease. Like the cornflower, awareness of ALS and funding for care and a cure is growing across Canada. An event doesnt have to be a Hollywood production, but plan to make it as attractive as possible to the media. Some factors to consider: What is happening? A truck pulling up with hundreds of flowers? Children making boutonnieres? Volunteers on the streets? Make the event as dramatic and visual as possible. Even if the event lasts all day, try to find a visual moment that might attract media attention. Who is there? A celebrity kicking off the flower distribution Someone living with ALS, a caregiver or health-care worker with a story to tell Will a large number of people be attracted to this event? Media prefer to tell personal stories rather than outline background fact sheets. When is it happening? Is the event being held during business hours when the media might have time to attend? Is the event being held on a weekend where a large number of participants might attract the media? A soft news item like a health organizations flower day is more likely to be featured in a weekend edition or broadcast. Where is it happening? A recognizable public space like a park or municipal office A more personal space like a hospital room Choose a location that provides an interesting backdrop to the activity.
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Open forum a panel of healthcare specialties and people with ALS discussing issues facing those with the disease Exhibits in local malls Displays and health fairs Special events such as silent auctions, galas, concerts, golf tournaments Tag days, garage sales, bake sales Special events present opportunities to reach target audiences, increase visibility, involve the community, handout information and raise awareness and funds. Be ready for special events. Our Event in a Box checklist gives you an outline to have at your fingertips for whenever you are planning your special event.
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Event in a box
Participating in displays and health fairs allows us to reach our target audiences in person. With some display material, pamphlets and flyers and trained volunteers, you can present the ALS message face to face, allowing time for personal discussion and interaction. Your focus will be to increase visibility of the organization and the disease and to recruit volunteers. When planning for a display, consider the following. This checklist covers details for a large event; just select the points that relate to your needs.
Checklist Date, time, location, and theme Amount of space and set-up Table, chairs, table covering Restrictions re fundraising, selling items Storage space Location of washrooms Car parking facilities Public transit Medical services Security arrangements Access to telephone Signage Adjacent attractions Display materials, i.e., display boards, graphics Availability of electrical outlets Rent TV-VCR/DVD player Handout materials: flyers, bookmarks, etc. Schedule of volunteers to co-ordinate the booth Set up and dismantling arrangements
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Photography Media invitations Draw to enable obtaining names and addresses for subsequent fundraising activity
General supplies include: Tape (Scotch, masking, duct) String Scissors Extension cord (indoor and outdoor) Rubber bands Thumb tacks Pens and pencils Stapler Ruler Phone numbers ALS specific supplies include: Displays (ALS Society sign, March of Faces banner) PowerPoint presentation (10 Facts about ALS) PSAs (What would you do, while you still could?) Giveaways cornflowers information cards business cards ALS publications (Fact Sheets, Research News, research updates, Northern Neuron) Technical details: TV/VCR/DVD player Computer and LCD projector Other suggestions: Wear colours that complement the ALS purple or wear ALS t-shirt, cap etc. ALS pin Check out Section 5, Making Presentations, for other tips.
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print announcement. Fax or e-mail the PSA. E-mail is increasingly popular because the text can be downloaded into word-processing systems. Include all the deadlines on your planning calendar. Some monthly magazines have up to a three-month lead time for submissions. Try to send the PSA to a specific person in the organization: your announcement has more chance of appearing if it has a personal advocate. Include the name, phone, fax and e-mail address of the ALS contact person. If your local Society has the resources, consider producing your own audio PSA. On a recorded PSA you can include music and more production values that merely having it read by an announcer. Refer to Section 6, Public Service Announcements and Print Ads, for suggested format and sample PSAs.
ciations will often draw media interest. If contacted early in the academic year, high school students might make ALS a community outreach project. Ask community and religious groups to designate the first Sunday or another day in June as ALS Day. Many will include material in their newsletters, web sites and service leaflets, and may become involved with the flower drive. The membership of the local Society will provide ready-made contacts. Ask to speak to the local ministerial group a gathering of clergy from many denominations and in some communities are an interfaith group. ALS Canada provides a generic church bulletin form that can be used by churches during ALS Month and to promote ALS Society events. Offer speakers who can make presentation about ALS in schools and to service groups. Speaker resources 10 Facts About ALS are included in the Communications Manual. Look for corporate support Business and health organizations both need publicity to get their messages to the public. Business sponsorships can range from funding for the event to employee participation in the activity. A promotional partnership with a business the printing and distribution of a poster, for example can produce high-visibility and public awareness. The person with ALS and/or family members may suggest a corporate connection. Unit and National offices will likely have organized corporate sponsorships. Keep in touch with them so that you can be part of the relationship. Most business sponsorship will have guidelines to follow. Developing contacts in business is an ongoing project for the local Society. Most corporate sponsorship or partnerships will result from a personal contact with someone who is in the business. Competition for corporate involvement in the community is stiff.
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Making Presentations
In this section Preparing a presentation about ALS Some tips on making presentations Planning the presentations Captivating your audience ALS speakers resource list
Section 5
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nicates how you feel about your material. Your audience will respond as much to your feelings as they will to your words. If you appear enthusiastic, the audience will be enthusiastic. If you are tentative, they will be too. Also, an important quality of a successful speaker is sincerity. Indeed, if you do not speak with sincerity, everything else is useless. To grab your audience, be sincere and convinced.
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An attention-getting introduction is very important: it is the first couple of minutes that will convince the audience to listen and will establish the speakers credibility. To arouse curiosity, use examples, anecdotes, personal experience, and dramatic facts. If you have enough room, move around. This allows you to establish a better contact with the audience and to project energy and authority. With experience you will be able to avoid reading your speech. Do not read from your notes. Rehearse in front of a mirror before your presentation.
Encourage participation
You can considerably increase the attention by associating the audience to your speech. Ask open-ended questions, i.e., questions that cant be answered with a yes or no. For instance: Does anyone here know someone with ALS? or How could you help the ALS Society? According to professional motivational speaker Dale Carnegie, In your audience, everyone feels concerned when one of them participates in the presentation. If a wall seems to separate the animator from the group in the room, encouraging participation is an excellent way to knock down that wall.
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Resources
Fact Sheets Use as handouts at a presentation or develop custom packages for volunteers, potential donors or community groups.
52 ALS Society of Canada
You may access the Fact Sheets through the ALS Society web site, www.als.ca. (See Section 10, Resources, for a list of available Fact Sheets.)
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Section 6
The two ads capture the tremendous effects of the disease with bold letters and photos of the hands of people who are living with ALS, reflecting the urgency to find a possible treatment or cure. They were created to build awareness of ALS and the ALS Societys efforts to support research towards a cure for this devastating disease.
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ALS Society ad campaign asks: What would you do, while you still could?
The ALS Society of Canada launched a new public service advertising campaign in January of 2005 created by BBDO Canada to raise awareness about ALS and the ALS Societys efforts to support research towards a cure for the disease. The nature and progression of ALS lead many of those living with the disease to consider how they will use the time they have left. This campaign asks consumers to consider a similar scenario with the question What would you do, while you still could? Were very excited about it because we think it will help the public better understand what ALS is all about, explains David S. Cameron, President & CEO, ALS Society of Canada. Were very appreciative of BBDOs dedication to this project and of those who donated their time and services during the production process. Created by BBDO Canada on a pro-bono basis, the campaign includes two 30-second and one 60-second television public service announcements (PSAs), Running and Hugging. We wanted to help people understand how ALS changes the lives of people living with the disease and those around them, says Stephanie Nerlich, Senior Vice President, Group Account Director, BBDO Canada. That led us to think about simple tasks that we take for granted, tasks that people living with ALS are forced to consider every day.
Excerpt In Hugging, viewers watch as a man hugs all that he comes in contact with a police officer handing him a ticket, his disinterested horse and the waitress pouring his coffee. As he hugs a tree, the line Most people with ALS lose the use of their arms in the first two years of the disease, appears on the screen. As he hugs his sleeping wife, the campaign tagline What would you do, while you still could? ALS kills the body first. Please donate, www.als.ca. appears. Running features a man on what appears to be an endless jog. As he stops to catch his breath, the line Most people with ALS lose the use of their legs in the first two years of the disease, appears on screen. The man then turns around and continues his run as the campaign tagline appears.
Both ads are available in French and English for airing as public service announcements and can be viewed online at www.als.ca. Television stations interested in obtaining a copy of the ad should contact Bobbi Greenberg at the ALS Society of Canada.
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BBDO Canada is responsible for managing the communication needs of some of Canadas largest and best known brands. BBDO Canada was established in 1992 and has offices in Toronto and Montreal. BBDO Canada is a subsidiary of BBDO Worldwide, in turn owned by Omnicom, a public company traded on the New York Stock Exchange. BBDO Canada has received numerous awards for the Running and Hugging PSAs. They were recognized with the following awards: Cannes International Advertising Festival The PSA Hugging has been awarded a Bronze Lion from the Cannes International Advertising Festival. This prestigious event, also known as the Olympics of advertising, was held from June 19-25, 2005, in Cannes, France and drew an audience of 8,000 people from more than 75 countries around the world. Ten Canadian agencies were among those honored at 52nd annual festival with awards presented in 10 advertising categories, including film, press, outdoor and cyber. Entries are judged by an international jury and the shortlist of approximately 450 films is decided by the first voting. A computerized voting system selects the highest marks given in each category and further voting establishes the ranking in each category which is the basis for the Juries discussions and the awarding of Gold, Silver and Bronze Lions. The film Grand Prix is then selected from all the Gold Lion Entries. Charities and public service categories are excluded from winning the Grand Prix. The Bessies Hugging received a finalist recognition (single) on June 9, 2005, at the Bessies. In 2004, the Bessies celebrated 41 years of recognizing the finest in Canadian television advertising. The Bessies is an annual TV commercial competition organized by the Television Bureau of Canada in conjunction with the Broadcast Executive Society. Marketing Awards Hugging and Running received a bronze award at the 2005 Marketing Awards. The Category was Public Service TV and Radio campaign. The Marketing Awards, which trace back 83 years, are Canadas leading national awards recognizing excellence in advertising creative. The 150-member jury examined 2,033 entries and gave out 158 gold, silver, bronze and certificate prizes. Canadian Marketing Awards BBDO Canada received a Silver Award at the 2005 Canadian Marketing Awards on November 25, 2005. The agency received the award in the Charity/Pro Bono Category. A total of 696 submissions were received in the 2005 competition.
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Agency of the Year Award BBDO competed against nine advertising agencies to take third place (bronze award) in Strategy Magazines 16th annual Agency of the Year award. Among the five campaigns entered by the agency was the PSA campaign they created for ALS Canada What would you do, while you still could?
Local PSAs
Find out various media outlet policies, lengths and timing by calling their public service director/co-ordinator. For broadcast, a general rule is to write 15- and 30second scripts. Contact your local community television station to see if they could assist in producing a TV PSA. Many radio stations will produce PSAs free of charge, since they are obliged by their CRTC licence to broadcast a minimum number of PSAs each month. Some suggestions:
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Checklist Open with the most interesting fact: the appearance of a celebrity, a community-wide event, a rhetorical question. Your first sentence may move your PSA up to the front of the line Mention the essential facts of the event: who, what, when, where, why Use the name ALS a couple of times throughout the PSA Avoid asking for money: you may ask for volunteer help Include a short explanation of what ALS is near the end of the copy. Refer to Lou Gehrigs disease Repeat the facts again near the end. If you have a local web site, give the URL Provide contact information
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Some style tips: Use short direct sentences Be conversational remember, this will be read informally over the air, e.g., Its spring, time to think about cornflowers. Address the listener directly make it personal, e.g., Do you want to have some fun and help out our community? Simplify numbers, e.g., Two to three Canadians a day die of ALS. Simplify technical language. Dont use medical/technical jargon, e.g., ALS is a disease that affects the nervous system.
Sample PSAs
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We are walking because ALS is a devastating disease. The average life expectancy is only two to five years. We are walking because every day, two to three Canadians die from ALS. We are walking to provide hope. We are walking for those who cant. Most people with ALS will lose the use of their legs in the first two years of the disease. What would you do, while you still could? For more information or to register for WALK for ALS please visit www.als.ca/walkforals A 30-second walk PSA: Join us as we take to the streets, sidewalks, paths, and parks across Canada in support of ALS research and to raise money to provide quality care for the thousands of Canadians living with ALS and their families. We are walking because ALS is a fatal disease. We are walking because every day two to three Canadians die from ALS. We are walking for those who cant. Most people with ALS will lose the use of their legs in the first two years of the disease. What would you do, while you still could? For more information visit: www.als.ca/walkforals
PRODUCTION: Music: upbeat How do you help a worthy cause and have fun at the same time? Come out and golf in the JIM HUGHES & FRIENDS
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GOLF CLASSIC! Were raising awareness and funds for ALS (sometimes called Lou Gehrigs disease). Support the cause by golfing in the classic, or by making a donation. Its a great way to enjoy a game of golf and all the while supporting ALS. The JIM HUGHES & FRIENDS GOLF CLASSIC, Friday June 8th (THIS FRIDAY) on the Links of the Niagara at Willo-Dell. For details, call 905-688-44-83. Sponsored in part by 610 CKTB. Sfx: golf swing
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610/CKTB Client Writer Date Jim Hughes Golf Classic #2 lh May 14 June 7
CREATIVE Length 30
PRODUCTION: Music: upbeat On Friday June 8th (THIS FRIDAY), tee up in support of ALS in the JIM HUGHES & FRIENDS GOLF CLASSIC! Were raising awareness and funds greatly needed for ALS (sometimes called Lou Gehrigs disease). Come out and golf in the classic, or make a donation. Either way, we need your help. So plan on spending the day on the greens and help support ALS. The JIM HUGHES & FRIENDS GOLF CLASSIC, June 8th (THIS FRIDAY) on the Links of the Niagara at Willo-Dell. For details, call 905688-44-83. Sponsored in part by 610 CKTB.
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Section 7
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Quick and easy access to information Who is your target market? Who will use your site? Keep that in mind when adding new copy Present information clearly and logically, making it easy for users to find what they want. Label pages and buttons accurately Remember the golden rule of web sites allow people to access information with as few mouse clicks as possible Update your site regularly. Remove out-of-date material Accessibility your contact info or link to it on the top/bottom of every page Include a way to return to the home page on every page Test your links Remove dead links Readability ensure that your text is easy to read; its difficult to read light text on a light background, similarly, dark text on a dark background Ensure text is large enough to read
What to avoid: Distractions such as too many graphics, blinking text, scrolling text, animation and music that takes time to download Pop-up windows (theyll annoy your visitors) Clutter Frames that hinder reading or printing Three articles that may be of interest are: Web site design tips (http://michael bluejay.com/webdesign/) How Users Read on the Web (http://ww.useit.com/altertbox/9710.ahtml)
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Communications
In this section Building an effective communications plan What is public relations? The communications plan
Section 8
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Fact PR provides four essential services all created and validated through the third party endorsement of the media: PR protects, promotes, and enhances your organizations image and reputation PR builds personal relationships with the people your organization depends upon the most PR influences decision makers and opinion leaders PR creates awareness and excitement
Integrated communications
An advertisement, no matter how good it is, is only seen by viewers for 30 to 60 seconds. Adding PR allows you to target specific audiences PR allows your story to be told in-depth, through the media. This ultimately increases the impact the message has on viewers PR can add credibility when the message is endorsed by a third-party or seen in the newspaper/news clip on the radio or TV
will be able to set priorities for those that can be supported within your budget or time constraints.
Checklist Following are key steps in establishing a communications plan: Step 1: Business plan assessment Step 2: Research situational analysis Step 3: Target messages/the media list Step 4: The strategy Step 5: The campaign Step 6: Budget Step 7: Action plan Step 8: Evaluation
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Scanning the environment Scanning the environment sounds ominous but all it involves is conducting a detailed background search on your product or service, your competition, your regulatory situation, current market trends, and public perceptions (this is very important). In effect, you are drawing an internal and external picture of your organization. Libraries and the internet are excellent sources. Review past clippings how was your Unit portrayed in the media? Conduct an analysis of the media coverage was it positive/negative? Segmenting the publics Publics is a PR word, loosely defined as specific groups of people or key organizational stakeholders. Its important to define your key publics (see Section 1, Introduction) because each one has a unique set of needs. Address their needs and you begin to develop a very special relationship. With enough effort on your part, this relationship blossoms into a partnership. The importance of segmenting, or breaking down, your stakeholders into individually identifiable groups, becomes apparent in step three of our communications plan, targeting key messages. SWOT Analysis The third step in our situational analysis is the SWOT analysis. SWOT is an acronym for Strengths, Weaknesses, Opportunities, and Threats. If scanning the environment is the foundation of a situational analysis, and segmenting the publics is the cement, SWOT is the heart and soul of the research process. SWOT analyses vary depending on your organizations goals and objectives. In our case, our SWOT will be focused on developing an effective communications plan. Strengths/Weaknesses: When you analyze the strengths of your Unit, you are documenting the strong points your Unit already has in place. Weaknesses, conversely, are areas in which your organization is limited or restricted. When scanning the environment, you may have missed opportunities and possible threats to the future success of your Unit. At this point in the situational analysis, we attempt to document these observations. Once the situational analysis is complete, its time to attack step three in our plan. Targeting your key communication messages to your publics.
Opportunities/Threats:
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Establish objectives Record all of the outcomes you want your plan to achieve. More specifically, do you want to: Increase government awareness? Increase public awareness? Raise funds for much-needed services? Decide what your desired objectives are and rank them in terms of priority or importance. What do you want to achieve first? What can wait until later? Once you know where you stand, you can determine where you want to go and how to get there. When establishing objectives, remember they should: Be improvement oriented Be clearly defined Be measurable Be attainable Be tied to specific expectations Identify your audience First, consider a broad audience to include those who affect the organization and those who are affected by it. You may cite groups such as those with ALS, family members, health-care professionals, media, volunteers, donors and community groups. The next step is to divide these larger groups into smaller, reachable target audiences and prioritize them so your communications effort is directed toward the most important among them. In this way you can direct your primary effort toward those groups on whom you are likely to have the greatest impact. The program Units have a number of different programs which are natural extensions of your objectives. For example, the WALK for ALS and Hike 4 ALS programs increase public awareness about ALS. The strategy A strategy is a general plan aimed at obtaining long or short-term results. The tactic Your tactic is the specific tool you use to implement your strategy. The ALS Society has a number of tactics in place to gain public awareness. For example, we have
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print ads and PSAs, a presentation about ALS and other resource material to increase awareness about ALS.
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Step 6: Budget
Once youve reached the budget stage you should have a well-thought out plan in place. Its at this point that you have to decide what kind of campaign you can afford. Instead of one budget, you really need two. First, how much is it going to cost to create the program the creative process? Second, how much is it going to cost to deliver the program?
Step 8: Evaluation
Finally, the last step, the plan evaluation. Think of your evaluation as a constantly changing and fluid process. Strategies arent written in stone. Some tools prove to be ineffective, while others seem to appear out of the blue halfway though the campaign.
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Evaluate every step of your plan, every step of the way. Ask yourself the following: Is your plan working? Are your tools working? Has anything gone wrong? Why? How can I fix it? Evaluation methods Before you began your campaign, you had a general understanding of where your organization stood and where it wanted to go. You had a benchmark or starting point from which to gage your future success. The following can help you measure the success of your campaign: Media clippings Discussion groups Surveys (in your newsletter or on your web site)
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Communications Tools
In this section Our logo Writing a Unit/Chapter newsletter Why publish a newsletter? Newsletter content
Section 9
The ALS Society of Canada produces a series of resources to assist local volunteers with their communications activities. They include:
Checklist Fact Sheets (French and English) Research News (French and English) Research Update (French and English) Research Synopsis (French and English) Northern Neuron (French and English) Coast to Coast (French and English) 10 Facts About ALS presentation (French and English) Elizabeths Hope; Making Hard Decisions (for health-care providers); Making Hard Decisions (for the general public) Videos (English only); available from LM Media Marketing Public Service Announcements (Hugging and Running) are available from the national office Radio PSAs promoting WALK for ALS Logo Web site
Our logo
Our logo was designed to express the nature and goals of the ALS Society community. What does the logo say about the nature of the disease? What does the logo say about the work of the ALS Society? The ALS Society of Canada logo, in wide use since 1996, was designed by Trevor Pedler of Portofino Studios and a former board member. The bilingual logo incorCommunications Manual Section 9 75
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porates an element of humanity and an element of fluidity that helps explain ALS the physical degeneration, mental alertness, or weak body and a strong mind. The colour was selected for its distinctiveness and for its authority. The strong image has assisted in the wider recognition of ALS, the disease and the work of the ALS Society. It is registered with the Government of Canada. The national identity is composed of the symbol, ALS/SLA monogram, English and French names. The ALS Society logo may be used in two ways: With the full name of the organization in French and English below the image and acronyms ALS SLA Without the full name of the organization below the image but with the acronyms ALS SLA
When the full names are used, they describe the monograms used. Never use the English monogram with bilingual names, never use English and French monograms with the name in just one language. Never distort or curve the identity elements.
AM YO TR
DA NA CA
Our logo is an important symbol for our organization. For information about logo usage please contact [email protected].
E DI NA CA SOCIT
NN ED E LA
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YO TR OP HIQU E
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Colour specifications
The ALS logo colours are Pantone 2627C (for coated stock) or black. For uncoated stock use 2613U. In four-colour printing, pantone 2627 should be substituted with 78% cyan, 100% magenta, 0% yellow and 23% black. No other colours may be substituted. The logo may not be reversed.
Protection zone
The ALS Society of Canada logo must maintain a protection zone around it, allowing it to stand without interference. Using the height of the letters in the acronym ALS as a unit of X, place the X around all sides. No type or graphic element may be within the protection zone.
Minimum size
The ALS Society of Canada logo may appear in a variety of sizes, as long as it is always sized proportionately and not stretched, condensed or angled in any way. The minimum acceptable size of the logo is 1.5" wide.
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265 YORKLAND BOULEVARD, SUITE 300,TORONTO, ONTARIO M2J 1S5 CHARITABLE REGISTRATION 10670 8977 RR0002
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Newsletter content
Checklist
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Profiles of people living with ALS and their caregivers (stories of hope and inspiration) News from the national office (new publications, fact sheets, etc.) Unit news and stories Research news
Tips
Adhere to a style guide; we use The Canadian Press Stylebook as our official style guide. For example, MD (with no periods) Less is more in writing Be sure to proofread use spellcheck, proof backwards Make sure that you have news news they can use for example, new developments in research and sources they can turn to for more information Keep stories short and to the point invite readers to check your web site for more information Ensure all your facts are correct Adhere to deadlines Balance long and short articles for variety Most important article should go on the front page (if it is long continue it inside) News should be timely and interesting Develop a network of contacts to write articles, take photos, generate ideas and information Profile achievements or awards of clients Thank your volunteers what have they done? Recognize individual achievements Use lots of direct quotes
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Photo tips
Ensure photos are in focus, sharp, and clear Avoid photographing against a light background (into the sun) Try to take action photos Include captions with the photos
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Circulation
Post your newsletter on the web (is it going to be a web-only publication this will save time and money). And, make sure to prune and update your list regularly. Whom do you want to include on your mailing list? Clients Members of Provincial Parliament Donors/funders (past and current) Media (local) Other units
Writing tips
The most important is the KISS rule Keep it simple, sweetheart. Write with your reader in mind. If you have a story, tell it Use active verbs Vary the length and structure of your sentences Minimize the use of the passive voice Eliminate jargon Write interesting headlines to catch the readers attention you want them to read the articles Say what you mean in as few words as possible
Typeface tips
Avoid excessive use of caps Stick with one font (we use Garamond) In the body copy of your newsletter go for larger rather than smaller use 12-point type Dont overuse bold face
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Headlines should be short and catchy entice readers to read the body copy The most readable typeface is black on white
Evaluation
How do you know if you are successful? Feedback from your readers Readers clip your articles and keep them
Other tips
Build in regular feedback features Run contests (this will help assess as to how many people are actually reading your newsletter) Take care of your mailing (email list). Prune it regularly And, most important of all, ask for readers feedback do a formal readership survey on a regular basis.
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Resources
In this section ALS Society Resources Fact Sheets Research Updates Web site Policies Crisis communications Privacy policy Euthanasia and assisted suicide Sample resources
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Checklist Fact Sheet #1 Fact Sheet #2 Fact Sheet #3 Fact Sheet #4 Fact Sheet #5 Fact Sheet #6 Fact Sheet #7 Fact Sheet #8 Fact Sheet #9 Fact Sheet #10 Fact Sheet #11 Fact Sheet #12 Fact Sheet #13 10 Facts about ALS 10 Faits Relativement La SLA When Speaking About ALS En Parlant De La SLA Our Mission Notre Mission Caregiver Stress (for caregivers) Le Stress Chez Laidant Reducing Stress (for caregivers) Diminuer Le Stress ALS-MS-MD SLA, SP et DM ALS First Step (for caregivers) SLA Les Premiers Pas ALS Ways to Help (for caregivers) SLA Comment Aider The Dangers of Unproven Therapies Les Dangers Des Thrapies non Prouves Natural Health Products Produits Naturels Clinical Trials Essais Cliniques Genetic Testing for ALS Tests gntiques pour la SLA Primary Lateral Sclerosis Sclrose latrale primitive
Research Updates
These research updates profile the research undertaken by some of the top ALS researchers in Canada.
Checklist Research Update #1 Research Update #2 Research Update #3 Research Update #4 Oxidative Stress Not the Whole Story Bien Plus que le Stress Oxydatif Rapid Diagnosis for ALS Un Diagnostic Rapide De La Sla Lhorizon ALS4 Gene Found Dcouverte du Gne Als4 ALS Research Accelerates Les Progrs Dans La Recherche Sur La Sla
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Research Update #9
Another step for stem cells Autre Pas Dans La Recherche Sur Les Cellules Souches Misadventure in the Motor Neuron Incident Chez Le Motoneurone Cognitive Deficits Provide Clues in ALS Les Troubles Intellectuels Donnent Des Pistes Dans La Sla Devoted Researcher Brings New ALS Lab to Canada Chercheure Dvoue Ouvre Un Nouveau Laboratoire De Recherche Sur La Sla Au Canada Help or Hindrance Un Alli Ou Un Obstacle?
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Web site
The ALS Society of Canada web site contains current information about the disease and the Societys various programs. Visit www.als.ca. Other ALS links: The ALS Association (ALSA), http://www.alsa.org USA Newsletter, http://Als.mdausa.org http://www.alsmndalliance.org/ http://www.alslinks.com/ http://www.alsnetwork.com/ http://www.geocities.com/sweekes99/ALStitle.html http://www.als.net http://www.lesturnerals.org/ The WFN Research Group on Motor Neuron Diseases, http://www.wfnals.org/ Neurology forum, http://www.neurologychannel.com/als/ Les Turner ALS Foundation, http://www.lesturnerals.org ALS Therapy Development Foundation, http://www.als.net Johns Hopkins ALS Center, http://www.neuro.jhmi.edu/alscenter/ The ALS Reporter, http://www.tapa.com/ALS/ ALS Survival Guide (personal web site of someone living with ALS), www.lougehrigsdisease.net BrainTalkCommunities (online discussion), http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi/
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Policies
This section contains the policies that have been approved by the ALS Canada Board of Directors that affect communications, i.e., Media Relations Crisis Communications Privacy Assisted suicide
Procedure
An ALS Unit will bring to the attention of the President & CEO any issue in any part of Canada which appears to have media potential beyond the boundaries of any one jurisdiction. Issues confined to the Units boundaries may also benefit from the utilization of this procedure, since expertise is available to support the Unit. The President & CEO and the Director of Communications will immediately institute a crisis communications team to handle the crisis. Time will be of the essence. With the help of the Unit involved, a preparatory paper will be e-mailed to the members of this team outlining the problem, and suggesting some possible responses. A teleconference will occur to develop the response methodology, including the designation of the spokesperson, the key messages, and the target audiences for these messages. All Units will keep the right to follow-up their own communications and will be responsible for it. ALS Canada may co-ordinate the process. The team may be supplemented as the crisis unfolds. When the crisis has subsided, an evaluation of what was learned will be conducted by the Director of Communications. The results will be used to improve these
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procedures in the future. ALS Units will provide assistance to ALS Canada to support them in responding to media. ALS Canada will co-ordinate an organized response to issues that capture the attention of the national media. ALS Canada will provide clear and trustworthy information to the media and provide assistance to the Units to support them in responding to regional media. These events often begin with a call from the media and can develop very quickly. Each group needs to assess its ability to meet these communications situations. Having a Crisis Communications Protocol in place enables us to manage the event more effectively.
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Key messages if requested to comment on the relationship between ourselves and the Lou Gehrig Society of N-AB: The ALS Society of Alberta is a completely separate legal entity from The Lou Gehrigs Society of Alberta though we both provide services to those with ALS The ALS Society of Canada, in partnership with ALS Alberta, is the only national organization whose mission encompasses care for those with ALS and research for a cure The mission statement of the ALS Society of Alberta states: The Amyotrophic Lateral Sclerosis Society of Alberta is dedicated to making everyday the best possible day for people with ALS by providing support, facilitating the provision of care, promoting awareness, and helping find a cure Both organizations provide services to those with ALS, and the needs of those with ALS are of paramount importance to both organizations Remember: Whenever possible, respond positively and keep on the theme. Only respond to questions that are asked, using one of the above statements. Do not offer any more information. If the interviewer asks more questions, repeat the same responses. Stay neutral in tone when referring to LGS of N-AB and have a positive tone when referring to ALS AB.
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plan to cover the unexpected and be ready to respond quickly and consistently to unexpected events. What can happen? Events can be generally divided into external and internal events, i.e., External Events: do not involve the local group directly but may appear in the wider community and impact the ALS network, for instance: A dramatic breakthrough in ALS research An incident relating to assisted suicide An incident of possible criminal activity in another local society A celebrity announcing that s/he has ALS Internal events include activities such as: Accidents in settings where there is interaction among ALS staff and/or volunteers and people with ALS and at ALS events Incidents involving ALS staff, volunteers or a person with ALS: abuse, harassment, fraud, theft, slander, violence
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Tips Things to communicate in a crisis: What can be prepared in advance? Messages that build credibility and trust You dont need the entire story to start your communications Dont be defensive Show you are engaged and concerned Show your compassion, sympathy, empathy for the affected parties
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Four things you must have to communicate effectively in a crisis: Take action and tell the public about it. Provide regular news updates State what you know and what you have and havent done Use experts, third parties where appropriate Have a clear explanation for your action and position and next steps
Privacy policy
Posted on the ALS Society of Canada web site
We protect your privacy The ALS Society of Canada recognizes your right to privacy and pledges to protect it. The ALS Society is aware of our responsibilities under the federal Personal Information and Electronics Documents Act (PIPEDA). Information collected When visiting our web site, our web server automatically logs (records) domain name and standard information about the operating system and web browser you are using, as provided by your web browser. This information is used for statistical purposes to help us manage our site, but it does not identify you in any way. We collect personal information about you only if you volunteer it in a survey and/or guest book and/or other on-site registrations and/or make a donation. We may use this information to contact you for support purposes and to answer questions you submit to the site. All information is kept confidential. If you supply us with your mailing address online, you may receive periodic mailings from us with information about new programs and services or upcoming events, if you give permission to be contacted.
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If you do not wish to receive such mailings, please let us know by calling us at the telephone numbers below or by writing to us at the address below. Please provide us with your exact name and address. We will then remove your name from our confidential list. Donation information The Amyotrophic Lateral Sclerosis Society uses Secure Socket Layer (SSL) encryption technology to ensure the integrity and privacy of the personal and credit card information you provide when you make an online donation or register for an event. We maintain records of all contributions to the ALS Society of Canada. All information is kept private and confidential, stored in a secure location and accessible only by authorized staff. If you would like more information about the ALS Society of Canada privacy policy, please contact the Director of Communications at the telephone number in Toronto listed below or at the address below. Disclaimer The ALS Society of Canada is the only national voluntary organization in Canada that supports both ALS research and services for people with ALS and their families. It is a major source of information about Amyotrophic Lateral Sclerosis, which is based on professional advice, published experience and expert opinion but does not represent therapeutic recommendation or prescription. The opinions do not necessary represent the views of the ALS Society of Canada. For specific information and advice, please consult your personal physician. The ALS Society of Canada is an independent, voluntary health agency and does not approve, endorse or recommend any specific product or therapy but provides information to assist individuals in making their own decisions. Any reference to a commercial or non-commercial product, process, service or company is not an endorsement or recommendation by the ALS Society of Canada. The ALS Society of Canada does not endorse or recommend products, services or manufacturers. The ALS Society of Canada assumes no liability whatsoever for the use or contents of any product or service mentioned. The ALS Society of Canada is not responsible for the contents of any off site Internet information referenced by or linked to the ALS Society of Canadas Internet site. The inclusion of any link does not imply endorsement by the ALS Society of Canada of the site. Use of any such linked web site is at the users own risk.
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By using the web site, you agree to be bound by these terms of use. If you do not agree with any of these terms, do not use this site.
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Privacy resources
Your Privacy Responsibilities Guide for Businesses and Organizations to Canadas Personal Information Act available at www.privcom.gc.ca Canadian Standards Association Plus 8300 Making the CSA Privacy Code Work for You available for purchase through the Canadian Standards Association, 416-747-4000 Privacy 101: A Guide to Privacy Legislation for Fundraising Professionals and Not-For-Profit Organizations in Canada available at http://www.afpnet.org/ka/ka-3.cfm?folder_id=2086&content_item_id=12746 Privacy Act: http://laws.justice.gc.ca/en/P-21/index.html The Personal Information Protection and Electronic Documents Act http://www.privcom.gc.ca/legislation/02_06_01_e.asp
If you are giving an opinion make sure people understand that it is your own view. Before attending any media or speaking engagement it is wise to work out your response in advance.
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Samples
Attached is a selection of sample resources and handouts: ALS Awareness Month Communications Plan 10 Facts About ALS (PowerPoint) Biographies David S. Cameron, ALS Canada President & CEO Sean McConkey, Chair of ALS Canada Board of Directors Lou Gehrig ALS Society of Canada print ads Sample news release (Canon Continues Commitment to WALK for ALS in 2006) Sample news release (Hike The Trail To Help Us Prevail) Video Resources Public Relations Resources Employment Programs in PR and Communications Across Canada
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AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA SOCIETE CANADIENNE DE LA SCLEROSE LATERALE AMYOTROPHIQUE
Ex ecutive Summar y
The ALS Society of Canada needs to raise awareness and understanding of amyotrophic lateral sclerosis to increase donations and raise funds for a cure. June is ALS Awareness Month, our greatest opportunity to show the community who we are and what we stand for. The ALS Society needs to foster and strengthen its public profile so that more people can empathize with our mission and understand who we are. The largest obstacle that the ALS Society of Canada faces is the lack of knowledge and understanding about the disease. People w ill n ot don ate to a cause if th ey ar e n ot aw ar e of it or do n ot un der stan d it. The effect we hope to have on individuals is primarily education regarding the disease and secondarily to inform people as to how they can donate money to help fight this devastating disease. The donation message is much more subtle. By informing people about ALS, and its effect on those living with the disease and their families and caregivers, hopefully they will then donate funds to their local unit and/or the national office. Our success will be evaluated on three levels: Donations generated Media recognition Feedback from stakeholders (internal and external)
Objectives
The objectives for the ALS Awareness campaign include: To promote the month of June as devoted to ALS awareness thereby leading to: Increased awareness within the community about ALS Increased funds raised for research and services to aid those living with ALS and their families To increase government support for financial resources and aid within the healthcare system for those affected by ALS and their families To motivate and build volunteer strength
Str ategies
The strategies for the ALS Awareness campaign include: To provide provincial units and local chapters a variety of promotional ideas that can be developed and implemented in local communities throughout the month of June To distribute awareness materials to provincial and local chapters for delivery to the media so that a consistent message is sent across the country To encourage a unified effort throughout all ALS units regarding campaign launch dates, press releases and other media materials
Tactics
The tactics for the ALS Awareness Month campaign will include: Media strategies: Distribute media advisories and/or press releases about ALS month Deliver a letter of proclamation for your local mayor Sample Member of Parliament/Legislature Statement in your provincial legislature/House of Commons announcing that June is ALS Awareness Month Distribute information about ALS (ALS Story) Distribute an information sheet/press release about the blue cornflower Send material to your MPP/MLA for him/her to include in his/her newsletter (called a 10 percenter)
The key audiences for this campaign are as follows: In ter n al: Volunteers and staff from the ALS Society Donors People living with ALS Caregivers Ex ter n al: General media Health media Local, Provincial and Federal Government(s) Health-care professionals General public
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What are the effects of ALS? ALS begins to take its toll on the body very quickly. Many people are debilitated before learning they have the disease. ALS does not affect the senses: taste, touch, sight, smell and hearing. People with ALS remain conscious and aware. Those living with this devastating disease find themselves trapped in a body that does not work. Not only does ALS affect those living with this devastating disease, but it also affects havoc on family members and caregivers. As they cope with the prospect of advancing disability and death, financial and emotional reserves are spent. ALS is a costly disease demanding both extensive nursing care and expensive equipment. What is the future for people living with ALS? Because there is presently no treatment available that prolongs life significantly, those living with ALS find good planning and social and medical management focal in easing the burden placed on themselves and their family. Research is helping to find a cure and ways to treat the devastating disease. What is the mission of the ALS Society of Canada? The mission of the ALS Society of Canada is to fund research towards a cure for ALS, provide information to build awareness about ALS, and support provincial ALS Societies to provide quality care for those affected by ALS. The ALS Society of Canada, founded in 1977, is the only national voluntary health organization dedicated solely to those affected by ALS. Research Message from Dr. Janice Robertson ALS Researcher at the University of Torontos Centre for Research in Neurodegenerative Disease: The incidence of ALS is two per 100,000 individuals with 2,000-3,000 Canadians living with the disease at any one time. The average expected lifespan of someone diagnosed with ALS is two to five years, with two to three Canadians dying every day from the disease. Currently there is no cure and no effective treatment. This will change with increased support for research. It is through research that a mutant gene causative of familial forms of the disease has been identified, and it is through research that treatments targeting this gene are being developed, providing real and palpable hope for those living with this form of the disease. More research is required to identify additional targets so that new and more widespread treatments can be developed for all forms of ALS, until the disease itself is eradicated.
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ALS Story
What is ALS? Amyotrophic lateral sclerosis ALS is also known as Lou Gehrigs disease, after the famous American baseball player who died of ALS in 1941. ALS is a fatal, rapidly progressing neuromuscular disease. ALS causes degeneration of the motor nerve cells. These nerve cells control movement by sending electrical impulses to the muscles. When the motor neurons degenerate, the muscles weaken, resulting in paralysis. Definition of ALS: A = absence Myo = muscle Trophic = nourishment Lateral = side (referring to the spine) Sclerosis = hardening or scarring The effect on the body is catastrophic. An affected person may first notice a slight weakness in a limb, or a slight loss of co-ordination. These initial signs develop into a relentlessly progressing paralysis as the individual loses voluntary movement, and ultimately, the ability to breathe. People with ALS usually die within two to five years of their diagnosis. Although it has been well over a century since the first complete description of ALS by French neurologist Dr. Jean-Martin Charcot, the cause of ALS is not yet known and there is no known cure. The drugs currently available do very little to prolong the life of those with the disease. ALS is the most common cause of neurological death in Canada. Approximately 3,000 Canadians are currently living with ALS and every day two to three people in Canada die of the disease. Until recently, ALS was thought to spare the brain, the organs and the senses. We now know that ALS is very complex, and its effects are not confined to voluntary motor control. While progressive paralysis is the overwhelmingly predominant symptom, there can be subtle effects on the function of the brain (cognitive function), and the organs and senses (autonomic function).
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There is currently no way to predict who will develop ALS it strikes both men and women, of all ethnicities, all over the world. While symptoms usually first appear in middle age, the disease can also onset as early as the teen years. The causes of ALS are not well understood. ALS is not just one disease, but several, all with the same outcome: progressive motor neuron degeneration. Some forms of ALS are inherited, but this cause accounts for less than 10 per cent of cases. Most cases are classical, or sporadic, having no family history of the disease. Current research into the cause of ALS investigates many areas, including genetic dispositions, immune system changes, environmental toxins, infectious agents and cellular mechanisms. Research toward an effective treatment for ALS is progressing more rapidly than ever before. Some of the strategies in development include drug, gene, and stem cell therapies. Because of the complex nature of ALS, it is likely that a combination of many therapeutic strategies to attack the disease at all levels will be the best approach to slowing, or even stopping, the course of ALS. ALS Facts Every day, two to three Canadians die of ALS Approximately 3,000 Canadians currently live with ALS In at least 80 per cent of cases, ALS strikes individuals with no family history of the disease Less than 10 per cent of cases are hereditary ALS can strike anyone, regardless of age, sex or ethnic origin The usual age of onset is between 40 and 70, but some have been younger than 20 Eighty per cent of people with ALS die within two to five years of diagnosis. While some may live longer, others die within a few short months. And, 10 per cent of those affected may live 10 years or longer ALS affects the whole family ALS is a costly disease emotionally, physically and financially ALS Society of Canada The mission of the ALS Society of Canada is: To support research towards a cure for ALS To support ALS partners in their provision of quality care for persons affected by ALS To provide information to build awareness about the disease
ALS CANADA AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF CANADA SLA CANADA SOCIT CANADIENNE DE LA SCLROSE LATRALE AMYOTROPHIQUE
265 Yorkland Blvd., Suite 300, Toronto, Ontario M2J 1S5 Phone toll free 1 800 267-4257 Phone (Toronto area) 416 497-2267 Fax 416 497-1256 E-mail [email protected] Web site: www.als.ca
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Global Day
Every year since 1997, the International Alliance has celebrated June 21 as the global day of recognition of ALS/MND a disease that affects people in every country of the globe. 21 June is a solstice a turning point and each year the ALS/MND community undertakes a range of activities to express its hope that this day will be another turning point in the search for cause, treatment and cure of this awful disease. Members of the International Alliance undertake a range of activities to recognize ALS/MND. Many organize meetings of people diagnosed with ALS/MND and carers, some organize social events, meetings of Boards of Directors, undertake fundraising activities or simply reflect on being a part of the worldwide fight against ALS/MND. Why is it important? Global day is important because it is one day that members of the International Alliance have in common to reflect their dedication and role in the global fight against ALS/MND. Many countries already have awareness days, weeks and even a month of recognizing ALS/MND and stimulating a period of intense effort to promote awareness. But this one day allows us to recognize that we are not alone in our fight against ALS/MND, and that patients, carers, former carers, scientists, health care professionals, volunteers and many, many others, all of whom care, are all part of this fight. Who can be involved? Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND, and the impact it has on people, old and young. What can you do? On the day, You can do anything! You could: Tell 10 people you meet about ALS/MND Have a dinner party and charge friends to come and donate the funds to your local ALS/MND organization Write about ALS/MND to your local newspaper Have a picnic with your ALS/MND Association Ring up and volunteer for your ALS/MND Association
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Organize a meeting, and get a scientist to talk about research and ALS/MND Donate some money to your nearest ALS/MND Association (locations at www.alsmndalliance.org/directory/index.html) Work with a person with ALS/MND and help them tell their story of hope to a journalist for publication Buy some cards from an ALS/MND Association and send them to 10 of your friends, and ask each of them to tell 10 more people about ALS/MND Join the global chat session at http://www.alsmndalliance.org/chat.shtml Just talk up ALS/MND! Remember The fight against ALS/MND is a global fight. ALS/MND affects people in every country in the world, and takes no notice of race, colour, faith or economic status. It is indiscriminate, and every diagnosis affects a much larger circle of people family, friends, relatives, workmates and others. JOIN THE FIGHT DO SOMETHING ON GLOBAL DAY TO SPREAD THE WORD
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Fact Sheet
Two to three Canadians with ALS die every day Approximately 3,000 Canadians currently live with ALS June is declared ALS Awareness Month by Health Canada ALS is also known as Lou Gehrigs Disease, named after the famous baseball player who died from the disease in 1941 Eighty per cent of people with ALS die within two to five years of diagnosis. ALS can strike anyone, at any age regardless of gender or ethnicity In at least 90 per cent of cases, ALS strikes people with no family history of the disease The cause of ALS is unknown There is currently no effective treatment that significantly prolongs life There is no cure yet
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FACTS ABOUT
ALS
Amyotrophic lateral sclerosis Sclrose latrale amyotrophique (SLA) Lou Gehrigs disease Motor neuron disease (MND) Maladie de Charcot
Nerve cells degenerate Voluntary muscles become paralyzed The senses are unimpaired and the intellect may remain unaffected
Male or female Any ethnic origin At any age Some have been diagnosed as teens Usual onset is in middle age
Some will die within a few short months Some will live longer than five years
Less than 10 per cent are familial ALS ALS is not contagious
Ninety per cent of care is shouldered by family caregivers ALS is a costly disease emotionally, physically and financially
#9 Definition of ALS
A = absence Myo = muscle Trophic = nourishment Lateral = side (referring to spine) Sclerosis = hardening or scarring
FUNDS research to provide hope SUPPORTS Provincial Societies to serve immediate needs PROVIDES information to build awareness www.als.ca 800-267-4257
#11 The Provincial ALS Society provides quality care to those affected by ALS
Information and referrals Support for the person with ALS and their family Equipment Advocacy
David S. Cameron
Biography
David S. Cameron joined the ALS Society of Canada in September 2003 as the President & CEO. David has more than 20 years experience in the not-for-profit realm. Most recently he was with the Ontario Division of the Canadian Diabetes Association as the Executive Director. He held this senior position for five years and was responsible for leading more than 90 staff members in bringing in major changes within this health charity. His other association management experience includes Executive Vice-President and Chief Operating Officer at the Purchasing Management Association of Canada for 10 years. And, he also led the Motorcycle and Moped Association as its Executive Director for five years. David is active in the health charities field and sits on the Steering Committee of the Health Charities Council of Canada. In addition he is vice-president of the Orillia cottage association. David is a true visionary and is leading the ALS Society of Canada through a period of growth and transformation. Under his leadership the society has undergone a major strategic planning process and developed a new vision statement: Th e ALS So c ie ty o f Ca n a d a e n v isio n s a c u r e fo r ALS b y 2015. Since assuming his post, David has traveled across the country meeting with staff and volunteers at the provincial societies as well as meeting with the medical directors at the ALS clinics. His educational background includes a BA from the University of Toronto, and an LLB from the University of Western Ontario. And, he also received his Certified Association Executive designation from the Canadian Society of Association Executives.
Sean G. McConkey
Biography
Effective April 30, 2005, Sean G. McConkey was elected to the position of Chair of the Board of Directors of the ALS Society of Canada. McConkey's extensive experience in human resources and management will serve ALS Canada well as it strives to increase awareness of the disease and support for those who suffer from it. I will work to ensure that ALS Canada governs in a way that honours and supports the ALS Societys mission statements: to support research, provide quality care to those persons living with ALS, and to build public awareness, says McConkey. For the past five years, McConkey has been very involved with the ALS Society of Canada. He has sat on numerous committees. Starting as the Chair of the Human Resources Committee in 2000, he quickly took on two additional posts in 2001, serving as the Fundraising Committee Chair as well as Vice Chair of the Board of Directors. Currently, McConkey is the Director of Human Resources for Deloitte & Touche LLP. In this role he is responsible for guiding the overall HR strategy for the GTA region. These duties include planning, implementing, and managing human resource strategies through a team of HR professionals. This scope includes recruitment, compensation and benefits, training and development, employee relations, and ex-patriot programs. McConkey holds a BSc from the University of Toronto, and completed a post graduate diploma in Human Resources Management at Humber College of Applied Arts and Technology. He resides in Burlington with his wife and three daughters and enjoys gardening and skiing in his spare time.
Founded in 1977 as a national voluntary organization, the ALS Society of Canada funds research towards a cure for ALS, supports provincial ALS societies in their provision of quality care for persons living with ALS, and provides information to build awareness about this devastating disease. ALS (also known as Lou Gehrig's disease) is a fatal neuromuscular disease that paralyzes the body's voluntary muscles. Since ALS does not impact the senses and the mind may remain unaffected, people with ALS are aware of what is happening to their bodies. Every day two or three Canadians die from ALS.
Lou Gehrig
Biography
Lou Gehrig was born on June 19, 1903, in New York City, the son of German immigrants and the only one of four children to survive. In 1921, he went to Columbia Univerisity on a football scholarship. He was banned from intercollegiate sports during his freshman year for unwittingly playing summer professional baseball under an assumed name. Gehrig returned to sports as a fullback at Columbia during the 1922 football season and then pitched and played first base for the Columbia baseball team in 1923. That year, he was signed to the New York Yankees and began the consecutive game streak of 2,130 that earned him the nickname The Iron Horse. That record stood until Cal Ripkin Jr. broke it in 1995. On June 3, 1932, Gehrig became the fist American Leaguer to hit four home runs in a game. In 1938, Gehrig's game started to slip. He lacked his usual strength and was hitting poorly. At first he was diagnosed with a gall bladder condition, but it soon became clear that his problem was more serious than that. On May 2, 1939, he retired from baseball. He went to the Mayo Clinic for tests on June 13, and on June 19, on his 36th birthday, he was diagnosed with ALS. On July 4, 1939, the Yankees retired Gehrig's uniform number 4, making him the first player in history to be afforded that honour. He died two years later on June 4, 1941. Lou Gehrig was known and loved by his fans for his quiet humility. At his farewell ceremony at Yankee Stadium there were more than 62,000 fans in attendance, and when he gave his emotional farewell speech they stood and applauded for more than two minutes. This was his speech. Fans, for the past two weeks you have been reading about a bad break I got. Yet today, I consider myself the luckiest man on the face of the earth. I have been to ballparks for seventeen years and I have never received anything but kindness and encouragement from you fans. Look at these grand men. Which of you wouldnt consider it the highlight of his career just to associate with them for even one day? Sure Im lucky. Who wouldnt have considered it an honor to have known Jacob Ruppert? Also, the builder of baseballs greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to
have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy? Sure, Im lucky. When the New York Giants, a team you would give your right arm to beat and vice versa, sends you a gift, thats something. When everybody down to the groundskeepers and those boys in the white coats remember you with trophies, that's something. When you have a father and mother who work all their lives so that you can have an education and build your body, its a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed, that's the finest I know. So I close by saying that I might have had a bad break, but I have an awful lot to live for. Thank you.
Media Contact: Bobbi Greenberg, Director of Communications 416 497 2267 Ext. 208, [email protected]
Video Resources
The ALS Society of Canada has produced two videos designed for health-care providers treating people facing a life-threatening illness. The videos are intended to encourage discussion of issues important to an individual living with a life-threatening illness, their feelings, expectations and fears. Making Hard Decisions: Insights for Health-Care Providers Making Hard Decisions is a 20-minutes video, with an accompanying study guide, designed for health-care professionals to assist those with life-threatening diseases to discuss the hard decisions. The video shows Karen and Dr. Barry Smith, the former Dean of Medicine, Queens University, then living with ALS in conversation with broadcast journalist Judy Maddren. The Smiths discuss in a frank and intimate way their feelings, expectations and fears in the context of a life-threatening illness. Dr. Smith shares some valuable advice for all providers caring for dying people and their families. The video is also intended to enable health-care providers to facilitate the difficult decisions that will arise about their patients future health-care needs. Some questions that the study guide highlights to stimulate discussion include: What do you find particularly difficult when caring for a dying patient? What do you think would help you to improve the care you provide to dying patients and their families? How do you deal with your own feelings of sadness, grief, anger, etc. How can you avoid conflict or deal with conflict regarding treatments at the end of life? Making Hard Decisions: The Essence of Being Human This 30-minute video is designed to be viewed by people diagnosed with a life-threatening illness, their families and caregivers. It is intended to encourage discussion of issues important to an individual living with a life-threatening illness, their feelings, expectations and fears. It is also intended to enable them to face the difficult decisions that will arise about their future health-care needs.
Dr. Smith shares his thoughts, hopes, fears and anxieties when confronted with the diagnosis of ALS. The video and its accompanying discussion guide are designed to facilitate discussions between people diagnosed with a life-threatening illness and their families, the sometime difficult discussions of their own values, hopes, fear and feelings about life sustaining interventions. Some questions that the study guide highlights to stimulate discussion include: How do you discuss your feelings, your fears with others? What are your feelings about being diagnosed with your illness? In view of your illness, what decisions do you think you will need to face? Which decisions will be hardest for you? How did you share your diagnosis with your family? What would give you joy and happiness in the time you have left? How do you manage? What helps you get through the day? Another excellent video is Elizabeths Hope. Elizabeths Hope (VHS Format) Elizabeths Hope is the inspiring story of one womans personal and public crusade against ALS. The one-hour documentary captures the passion of Elizabeth Grandbois, a person living with ALS and the organizer of a yearly benefit concert to raise funds and awareness about this disease. She was diagnosed with ALS in 1997 and has vowed to spend the rest of her life helping to accelerate the search for a cure and to improve the quality of life for others who suffer from the disease. Grandbois and her committee of volunteers have raised more than 1.6 million dollars. Both videos are available free of charge from LM Media Marketing Services Ltd. 1-800-2682380, [email protected]
With no nerves to activate them, muscles gradually weaken and waste, and paralysis occurs. Weakness is often seen first in the hands or feet, or the first sign may be swallowing difficulty or slurred speech. In the majority of cases the senses, intellect and memory are not affected. MND has often been described as deadly, creeping paralysis. Average survival time after diagnosis of MND is two to three years or less, with a few people surviving five or more years. In Australia approximately 1,300 people are living with MND. MND can strike anyone at any time, says Chief Executive Officer of the Motor Neurone Disease Association of Victoria, Rodney Harris. It strikes people down, robbing them of their independence, communication and their ability to influence their surroundings. Theres no cure, but we offer hope through care and support for people living with MND and their families through the services of the MND Association, and research to find causes, treatments and a cure for this rotten disease. During MND Awareness Week, and especially on Blue Cornflower Day (Friday 7 April) blue cornflowers a symbol of hope can be purchased from a variety of outlets around Victoria, with all proceeds going to help MNDA continue its essential work with the community. People living with MND and their carers are available for interviews to tell their story of the impact of Motor Neurone Disease on their lives.
Algonquin College
Ottawa, ON Program: Two-year diploma program in public relations, with field placement. One-year post-graduate program in technical writing, with field placement. Work Term: PR program: Two seven-week field placements, one in January/February, one in March/April. Technical writing program: Eight-week field placement in May and June. Range of Pay: Students are not paid. Process: Employer submits job description to the program co-ordinator, who reviews it and offers student referrals. Contact: Jim Catton, Technical Writing Program Co-ordinator (613) 727-4723 ext. 3327 [email protected] Peter Larock, Public Relations Co-ordinator [email protected]. Web site: www.algonquincollege.com/highband/swf/index.htm
University of Calgary
Calgary, AB Program: BA in Communications Studies. Length of Work Term: Four work terms of 1216 weeks each. Work terms may be done consecutively. Range of Pay: To be determined by the employer within their organizations wage structure. Posting Deadline: Work terms begin in January, May, and September, and students begin looking for placements in the third week of September, the third week of January, and the third week of May.
Process: Employers post job descriptions and students post resums on the intranet; the co-op director arranges interviews. Contact: Geoff Cragg, Director, Co-op/Internship Program (403) 220-4843 [email protected] Web site: www.ucalgary.ca
Centennial College
Scarborough, ON Program: One-year post-graduate program in corporate communications and public relations, including internship. Length of Co-op Term: Eight week internship, end of term. Range of Pay: Pay is at the discretion of the employer; typically an honorarium ranging between $600 and $2000 for the eight-week period. Posting Deadline: April-May placement: late February. August-September placement: late May. Process: The employer posts a job description; a co-op co-ordinator arranges interviews and works with students and employers to find a match. Contact: Jessie-May Rowntree (416) 289-5000, Ext. 8820 [email protected] Web Site: www.thecentre.centennialcollege.ca/index.html
Durham College
Oshawa, ON Program: Ontario College Advanced Diploma in Public Relations; three-year program (five semesters). Work Term: During the fourth semester, students work one day per week at a non-profit agency implementing a communications plan. At the conclusion of the final year, students take part in an off-site 14-week corporate field placement. Range of Pay: The one-day-a-week non-profit work is unpaid. Payment for the 14-week field placement is at the discretion of the employer; typically around $9.00 per hour. Process: Employer posts job description with the field placement coordinator, who serves as a gobetween for students and employers, handling job postings and student resums, arranging interviews, and matching employers with students. Contact: Lynn Gough, Field Placement Coordinator [email protected] Web Site: www.durhamc.on.ca
Humber College
Toronto, ON Program: Three-year advanced diploma program, including field placement. One-year post-graduate certificate program, including field placement. Length of Work Term: Diploma program: 16 week field placement. Certificate program: Eight-week field placement. Range of Pay: At the discretion of the employer; usually an honorarium or competitive salary. Posting Deadline: November to December for the16 week internship. April and August for the eight week internship. Process: The employer submits a job description to the program coordinator, who arranges interview with students. Contact: Ed Wright, Program Co-ordinator (416) 675.6622 Ext. 3012 [email protected] Web site: www.humber.ca/
Range of Pay: Payment is not required, but expenses are usually paid by the employer and an honorarium is often given. Posting Deadline: No deadline, but earlier a job is posted, the more students an employer will have to choose from. Process: The employer provides information on position by e-mail, which is then distributed to the class. Students apply directly to the company, the employer conducts interviews and chooses the student who best fits the companys needs. The work done by the student must be 80 per cent public relations work, and only 20 per cent administrative in order to meet the requirements of the program. Contact: Terri Smolar, Coordinator, Public Relations Diploma Program 604-599-2625 [email protected] Web site: www.kwantlen.ca/
Contact: 1 800 572-0103 ext.3298 Fax: 403 394-7370 [email protected] Web site: www.lethbridgecollege.ab.ca
Length of Work Term: Four months co-op session for three terms. Range of Pay: First term$200-$400/week Second Term$300-$525/week Third term$$340-$545/week Posting Deadline: Deadlines vary due to multiple work terms. Process: A co-op coordinator serves as go-between for students and employers, handling job postings and student resums, arranging interviews, and matching employers with students. Contact: Marilyn Power, Co-operative Education (902) 457-6493 Fax: (902) 457-1514 [email protected] Web site: www.msvu.ca
Contact: Amy Thurhlow, Department: Public Relations (902) 491-4689 [email protected] Web Site: www.nscc.ca
Seneca College
Toronto, ON Program: One-year Ontario College Graduate Certificate in Corporate Communications, including co-op term. One-year Ontario College Graduate Certificate in Technical Communication, including co-op term.
Work Term: Corporate Communications: 12-week final semester co-op session. Technical Communication: 12-week mid semester co-op session. Range of Pay: Typically between $13.00 and $17.00 per hour; sometimes an honorarium. Process: The employer posts a job description and students post resums on a secure online posting system. The co-op coordinator serves as a go-between for students and employers, handling job postings, arranging interviews, and matching employers with students. Contact: Yvonne Gilbert (416) 491-5050 Ext. 3764 [email protected] Web site: www.senecac.on.ca/cms/
Contact: Marcia Shimizu, Co-op Coordinator 604.291.3862 [email protected] Erika Wah, Co-op Coordinator 604.291.5542 [email protected] Web site: www.sfu.ca
Links
Here are some helpful links from Service Canada web site: Human Resources Management hrmanagement.gc.ca/gol/hrmanagement/site.nsf/en/index.html This is a part of the Service Canada web site and provides links to wage assistance and subsidy programs for employers Youth Employment Strategy www.youth.gc.ca/yoaux.jsp?&lang=en&flash=0&ta=5&auxpageid=659 This is also a Service Canada site, and it offers financial assistance through the Skills Link, Career Focus, or Summer Work Placement programs. Co-operative Education Directory http://www.cafce.ca/pages/home.php This site lists information on co-op programs in Canada CampusWorklink http://campus.workopolis.com/index.html This Workopolis.com site provides employers with access to a database of rsums and the option to post jobs CareerEdge http://overview.careeredge.ca/index.asp?FirstTime=True&context=0&FromContext=1&l anguage=1 This site helps to connect students and employers for internships AbilityEdge http://www.abilityedge.ca/index.asp?language=1 This site offers the same internship services as CareerEdge, but for students with disabilities Association of Canadian Community Colleges http://www.accc.ca/english/colleges/programs_database.htm This site provides a directory of community colleges in Canada Association of Universities and Colleges in Canada http://oraweb.aucc.ca/showdcu.html This site provides a list of Canadian universities and the programs offered