Health Union

Losing my father to hereditary amyloidosis (V122I) in 2020 was life-changing. When I later learned I am a carrier of the same genetic variant, it deepened my commitment to ensuring the Black community, especially its youth, has access to critical health information that can shape their future, and possibly improve outcomes for the older generation. As Founder of #hattrnextgen™, I created this independent initiative to raise awareness of hereditary amyloidosis amongst the black community. Through culturally relevant social media outreach, my mission is to empower the next generation with knowledge of their family health history, genetic risks, and the importance of early detection. #hattrnextgen™ is not affiliated with the Amyloidosis Research Consortium (ARC), and the views expressed through it are my own. My personal journey led me to the ARC where I now serve as Senior Manager of Education and Awareness. At ARC, I focus on advancing amyloidosis education, building care center networks, and collaborating with healthcare professionals to improve provider education, research efforts, and patient outcomes. Both my personal and professional missions center on awareness, education, and action—one through grassroots social media engagement (#hattrnextgen™) and the other through provider-focused education and institutional collaboration (ARC). I am passionate about influencing perceptions, amplifying underrepresented voices, and driving meaningful change in the amyloidosis space and beyond. In the words of my late father…. “If you believe in something, Lizbeth, you got to be willing to put your name on it or it doesn’t mean anything” So Signed Erin Elizabeth Ealy Poyant

Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis and Short Bowel Syndrome. She's written a children's book about FAP titled Life's a Polyp with Zeke and Katie. She started Life's a Polyp as an anonymous blog in 2012 sharing about her rare diseases. Over the years, LAP expanded to include her children's book, starting a FAP research fund with NORD, a podcast, and more. In 2026, LAP was announced to have transformed once again into Life's a Polyp Foundation, a 501(c)3 nonprofit organization taking her efforts for the FAP community to even deeper levels. Jenny continues rare disease advocacy outside of LAPF as well.

Porscha is a poet, essayist, and founder of Lucy Press, an independent publishing company that seeks to support and center writers at the margins with an emphasis on Black and disabled writers and creatives. Porscha shares her thoughts on disability and chronic illness and ​their intersections with her creativity in the Chronically Porscha newsletter. Porscha has been a fellow of The Watering Hole Poetry and a two-time fellow at Hurston Wright. Porscha has bylines in For Harriet, She Knows, Brit &Co, and ​other publications. Her work also appears in two anthology collections: Ask: Building Consent Culture and The Fire Inside volume II Find out more about Porscha and her work at ​www.Porschawrites.com

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