When we bring together a group of inspired, like-minded leaders, we make the necessary changes that benefit the entire community. Investing in patient leadership and advocacy training creates positive community results. We can educate, empower, and create a supportive environment for everyone to thrive. We launched something special in 2019 and continue to bring unity among advocates and organizations in our fibromyalgia advocacy training program.
May 10th & 11th, 2023
In September 2019, the Support Fibromyalgia Network launched a new grass-roots National Fibromyalgia Advocacy program. Patients, advocates, clinicians, and caregivers met on Capitol Hill for advocacy education and attended over 54 meetings to educate their legislative representatives about supporting critical fibromyalgia medical research, education programs, and accessibility to alternative pain care.
For 2020, initiatives expanded not only with a March in-person Hill Day, but added public awareness campaigns with Proclamations, regional meetings, and town halls. As the program grew virtually, we decided to advance priorities for fibromyalgia research, treatments, education for physicians, and mentor the next generation of fibromyalgia patient leaders by forming a coalition of organizations and fibromyalgia delegation.
We welcomed new perspectives to Fibromyalgia Advocacy in 2022, creating an entire ecosystem of change at the grass-roots community level. We were joined by other organizations, healthcare leaders, and local Fibromyalgia Delegates from all around the country to meet with Congressional leaders virtually in order to find our fibromyalgia champions and ask for a sustained investment in fibromyalgia-specific research that would ensure a proper classification, and an increase in translational treatments. A new National Fibromyalgia Delegates Training Program and National Fibromyalgia Advocacy Coalition was born.
The steering committee provides oversight, guidance, and support for the advocacy program from start to finish.
Melissa Talwar | California | Support Fibro
Brandi Privitera | South Carolina | Support Fibro
Kristal Kent | Ohio | Veteran Voices For Fibromyalgia
Anquinette Rollins | Michigan | Freddy Js Fibro Fighters
Danielle P. | North Carolina
John S. | Virginia
Veteran Affairs Committee
Kristal Kent | Ohio | VVFF
Brandi Privitera | South Carolina | SF
Anu D. | North Carlolina | VVFF
Al K. | Texas | VVFF
Melissa Talwar | California | SF
Participate in trainings, interviews, Proclamations, town halls, and collaborations with other chronic illness advocates and organizations. We’re turning the month of May into one of the largest public awareness months!
We are proud to be working with Being Fibro Mom, Veteran Voices For Fibromyalgia, Men With Fibromyalgia, My Several Worlds, Heart, Faith & Strength, Fibromyalgia Pain Chronicles, Looms for Lupus, and Lupus Spoons for May Awareness Campaigns that support Fibromyalgia, Lupus and Mental Health.
May 10 & 11
We sometimes forget that we do have the power to change things. As a Fibromyalgia patient we may feel defeated as most of us struggle to survive. A successful campaign is a joint effort that requires numerous people and tools to reach critical mass. By participating in the process, it allows your voice to be heard and it does make a difference!
Congress represents all of us. If we want more research and the cure, we will need to fight for it. The NIH needs to do more for Fibromyalgia research and we must let our representatives know! Sixty-five percent of House Chiefs of Staff would rather get a request from a constituent for a meeting than from anyone else.
Our advocacy efforts will lay down the groundwork for future years. We’ll continue to educate legislators and staff on Fibromyalgia, build relationships for future actions, and begin a new phase of training for Fibromyalgia around the country!
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