Speakers’ Bureau of 14 ‘Experts’ Living With Sarcoidosis Opens at FSR
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A Patient Speakers’ Bureau is opening at the Foundation for Sarcoidosis Research (FSR) to advocate on behalf of people with this rare disease of the immune system and bring greater awareness to it.
Fourteen trained and experienced patient advocates will use their personal stories to help others in understanding sarcoidosis, which is thought to affect between 150,000 and 200,000 U.S. residents.
“This is a very proficient group of patient advocates who each have their own mix of manifestations and personal stories about their sarcoidosis diagnosis,” Mary McGowan, FSR CEO, said in a press release.
“Their inspiring stories and insightful reflections add a vital voice to improving the understanding of the lives and experiences of chronically ill patients,” McGowan added. “Each of their finely crafted stories help to build understanding, awareness, and provide depth to our understanding of the challenges of triumphs of living with a complex rare disease.”
To be able to speak on a range of sarcoidosis topics, the speakers were trained by Living Proof Advocacy, an organization that provides consulting and coaching services, as well as coaching certification. These advocates have been featured in national publications such as The Washington Post and Huffington Post, and have appeared on national TV programs. They have also served at conferences as panelists and in speaking roles, and have shared their stories with federal and local lawmakers.
Members will be able to discuss with the public topics that touch on what it’s like being immunocompromised during the COVID-19 pandemic, living with a rare and chronic illness, patient access to proper care and treatments, and how to improve communication between patients and healthcare providers.
Audiences are expected to include patients, donors, industry members, physicians, media members, and policymakers. Those interested in arranging to speak with a bureau member may do so through the FSR website.
FSR Speakers’ Bureau members are Yvonne Holt James, Cheryl Bradford, Brandi Cleaver, Garrie Farrow, Mary Morlino, Jim Kuhn, Jessica Reid, Michael Patterson, Tara Sims, Rebecca Stanfel, Rhonda Underhill, Sammy Suriani, Leanne West, and Della Washington.
“I am living with sarcoidosis. We are frenemies,” said Farrow in an introduction of members on the Speakers’ Bureau webpage. “Exposing my geek side here, I call my immune system ‘Venom.’ As long as Venom has external enemies to fight, it leaves me alone and protects me. No enemies to fight, I become its food.”
The FSR Speakers’ Bureau training program was sponsored by Mallinckrodt Pharmaceuticals, the developer of the sarcoidosis treatment Acthar Gel. The nonprofit FSR works to improve patient care, and has as its stated mission “a world without sarcoidosis.”
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