Learning From Past Awareness Day Success

The Northern Virginia CFS and FMS Support Group (NOVA) got its start more than 20 years ago as a chronic fatigue syndrome support group. Though people with fibromyalgia have participated since well before leader Elly Brosius joined in 1992, “FMS” was added to the group’s name just seven years ago.

NOVA’s outreach is a big one: its visitor list is more than 500 names long; in addition to holding monthly meetings, NOVA holds periodic national conferences; and the group runs an announcement-only Yahoo! Group, CFSupport, which has more than 800 subscribers—some in other states and even outside the Untied States. Last year the group’s National Fibromyalgia Awareness Day celebration had an outstanding response. Recently Brosius took some time to discuss the group’s Awareness Day success.

How many times has your group participated in Fibromyalgia Awareness Day?
Specifically emphasizing fibromyalgia, we have participated in Awareness Day twice. We have participated 12 times with the broader May 12 focus of awareness for chronic, immunological, and neurological diseases, which include CFS and FM.

How do you decide on your level of Awareness Day participation--or how big an event to stage?
Volunteers with these conditions are likely to have to push themselves some to prepare for any project or event—and significantly on the day of the event. Keeping that in mind, and wanting to avoid contributing greatly to [symptom flares], we plan events where the pushing will be the lowest for the highest-impact event. We plan so events can go on even if most volunteers cancel due to health or other reasons.

The NOVA group also makes it a priority to point out ways to participate in Awareness Day as an individual, from home, even if bed bound, by phone calls to congresspersons, notes on how to use advocacy and awareness websites, and tips on sharing FM information with strangers, friends and relatives. We also share sources for buying awareness-themed products.

How do you get people involved in your Awareness Day event?
We ask for volunteers at meetings, and through our email list and website. Sometimes we get none and we adjust by planning something very simple for our regular May meeting day and time [instead of a larger event]. One year it was passing around a few letters to Congress, getting a long list of signatures on each one. We let the community know about bigger events through strategically placed flyers, newspaper calendar notices, letters to the editor about Awareness Day, and emails to professionals and friends of the group.

Which year has been your most successful Awareness Day? 
Last year, our Awareness Day events were very effective. Eighty patients, friends, and family members saw the film “Living with FM” and were given the opportunity to talk about it afterwards. Several of those signed up to receive encouragement, information, and future event notices via NOVA CFSupport email. A new FM support group was established in Woodbridge, VA, subsequent to the film showing. To me, success means fewer people are feeling as isolated in their difficult circumstances, and more people are informed about many aspects of FM, especially the emotional aspects and the value of connecting with others—both so beautifully shown in the film.

Also last year, Mrs. Virginia 2007, Jennifer Phillips, whose platform is fibromyalgia, was in the Virginia contingent at CFIDS Lobby Day on May 15. Each meeting covered fibromyalgia as well as CFS. And, for the first time, I was present in a meeting when a member of congress, Tom Davis, joined us. He asked great questions, heard us, and agreed to sign a letter to NIH. Advocacy and awareness efforts do make a difference!

Can you tell us more about last year's Awareness Day?
Along with the NFA and Trillusion Media, the NOVA group partnered with two healthcare establishments, one north and one south of Washington, DC. Potomac Hospital and The Gilbert Clinic promoted FM awareness with us by agreeing to six showings of the documentary, “Living with FM: A Journey of Hope and Understanding.”

I start preparing before the official awareness activities are announced by clearing that week on my calendar each year, familiarizing myself with advantages and disadvantages of area meeting locations, and having the contact information for calendar notices.

Planning one film screening with a hospital as co-sponsor gave us the use of a large facility and the benefit of the hospital's advertising and registration system. NOVA provided the information for that advertising, adapting from the material sent by the NFA, and we ordered the DVD and Awareness Day kit. I read and personally signed the official event materials from the NFA. Two volunteers ran that showing by bringing the DVD and handling the technical difficulties, offering informational materials, managing the sign-in sheet, taking phone calls before the event, and taking questions after the film from the 50 attendees.

Thirty-five miles away, I spent Awareness Day facilitating five showings of “Living with FM” at The Gilbert Clinic. Three professionals and clinic staff were on hand to make us more comfortable, talk with the 30 attendees about fibromyalgia, and to provide the DVD player and projector. Multiple viewing times were planned since some people feel better in the morning and some later, and to account for cozier seating. Anyone arriving late could stay and watch the beginning of the next one. The clinic supported us with all-day flexibility, not usually available at free public meeting venues, and taking calls and registration. For these Gilbert Clinic showings, posting at the Brave New Theaters website, sending notices to our email list, and getting blurbs published in local newspaper calendars helped the most to get the word out.

What is your top tip for other support groups interested in putting together an Awareness Day event?

Get through the inevitable moments of feeling overwhelmed by remembering the healing potential of this service for you and for attendees. As much as possible, simplify everything, keep up your own self-care—and show up! Your presence is enough to make a difference.

To subscribe to NOVA’s CFSupport list, email mailto:cfsupport-owner@yahoogroups.com..

Learn more about “Secrets of a Longstanding Support Group,” written by Elly Brosius, here: http://www.geocities.com/cfsnova/articles/SupportGroupSecrets.html.

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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