Awareness Day 2007 Lessons Learned—and Shared
By Sue Kidd Shipe, PhD   

In 2007, the Fibromyalgia Support Group in Albany, NY, organized—in about a two month time-span—an Awareness Day event that garnered local television coverage. We hope that you might benefit from our experience giving our First Annual Fibromyalgia Conference. Take heart: the lessons aren’t that difficult!

Before you begin, find your passion. If you want to host a conference featuring presenters from a variety of therapies, do it! It’s fun! We had a great experience, positive feedback, and a “track to run on” for 2008. If you love helping others, if you recognize the pain and fatigue of fibromyalgia, and if you know people who can help, you have the recipe for success. Here’s what we learned—and what we’re applying as we plan for our next conference.

1. Build a team—including your medical advisor. When the International Institute For Human Empowerment, Inc., of which I am the founder and executive director (I’m also an FM patient), decided to hold a fibromyalgia conference, it was possible because of Agnes Welch, support group founder and leader; Betsy Shearer, co-leader; and Dr. Jonathan Cooper, physiatrist and medical advisor. With this collaboration and the support of Price Chopper, our local grocery corporation which provided their Community Room (complete with audio-visual technology), we jumped into conference planning.

What we learned: There are many people who want to expand their businesses by serving the FM family. However, not all are reputable or promote proven medical treatments. Caution must be exercised to prevent FM patients from becoming victims of those promising questionable “remedies.” To our surprise, these people seem to come out of the woodwork when they hear that there is to be a conference. By staying close to your medical advisor, you can be assured that you allow only those people of whom your advisor approves.

2. Develop a screening process for presenters. Our conference committee established a process for selecting conference presenters. We decided that it would be advisable to have any potential presenter first speak to our Fibromyalgia Support Group. Some of our chosen presenters had already presented to our group, so that requirement had been met. A few were well-known to our Medical Advisor, so got the approval of our committee in that way. This year, we have the advantage of last year’s presenter evaluations, as well as time to screen new potential presenters by first having them present to our group.

What we learned: Because of our tight timeline, we did not have time to completely follow our own process! Experience is a good teacher, and we learned that it was essential to stick to the process in the future. Watching presentations at your support group can provide you with key information, such as how well presenters interacts with the audience, whether they are prompt and well-prepared, and whether they seem to truly understand the FM experience.

3. Don’t delegate the important stuff. It’s important for your conference committee to actively communicate with health writers for newspapers and television. Watch to see if any news personalities have gravitated toward special reporting on fibromyalgia, or have done special reports on specific illnesses or on broad wellness programs. Be careful regarding those who advocate only certain strategies, as they may not fully address the broad spectrum of coping strategies including medications, physical therapy, occupational therapy, assistive devices, yoga or other appropriate exercise programs, aqua therapy, and other strategies recognized and approved for FM. Check to see if your media will do public service announcements. Leave event flyers in public places like bookstores, coffee shops, and libraries. Don’t leave this critical step up to someone else; be actively involved. This may provide you with other wonderful opportunities to assist with trainings, be interviewed, or guide local media to the people and resources that will assist with FM awareness.

What we learned: Marketing a conference is every bit as important as all of the other planning. Like many creative folks, we devoted less time to this aspect and therefore missed several opportunities to reach out to media and organizations in surrounding communities. This year we will be diligent in getting the word out so that more patients and caregivers can learn about services that can improve their quality of life.

4. Try to make conference attendance free, with a suggested donation. You can choose many ways to fund your conference, but keep in mind that many people with FM are no longer able to work, and may not receive Social Security Disabiltity or any other financial assistance. These people need information, but may not be able to contribute financially. By approaching businesses for support, and medical and legal professionals for a donation of their expertise and time, you can bridge a huge gap that may mean the difference to patients in your community between existing and living fully.

What we learned: Participants were so grateful for the information that they wanted another conference! We asked only for donations, and still managed to cover our expenses. The contribution of presentations and question-and-answer sessions by the professionals was so valuable that it would be difficult to assess. The information was invaluable to those patients and caregivers who needed it. Your contribution of a fibromyalgia conference will be important to your community as well.

5. Provide opportunity for structured feedback. Create a feedback form with space to evaluate each presentation. If at all possible, ask a professional evaluator, such as someone from a local college, to assist with all feedback and evaluation forms. Then have the information collated and a final report written so you can distribute it the  presenters, as well as to future potential funders. By asking participants what they felt was valuable, and what could be improved, you will gather important feedback to plan your next conference.

What we learned: Participants were pleased to provide feedback. Here is the summary report prepared by our professional evaluator, Ruth J. Kellogg, Ph.D. It is quoted directly here for you to see that our effort was appreciated, valued, and met a true community need.

If we could do it, you can too! Good luck!

View other articles in the Winter 2008 edition:

Spotlight on Leadership

SG Leader Shares Her Group's Awareness Day Success

Strategies for Support Group Leaders

Tips for Planning and Organizing Your Event

Advocacy Tips for Leaders

Reflections: Awareness Day 2007

Leaders in Action

Planning a Conference - One Leader's Experience

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Upcoming Events & Announcements