The 2026 Community Hero Award Goes To…Ranae Beeker!

By Beth Johnston and Jack Gerblick

---

One way we celebrate the resilience and brilliance of our FSHD community is to recognize our heroes – community leaders who have gone above and beyond to raise visibility, and to mobilize the community into action to advance our mission. 

Given only every-other year at our biennial FSHD Connect Conference banquet, The Community Hero Award recognizes an individual, family or group that has inspired and empowered the FSHD Community through their exceptional volunteer work in advocacy and/or in fundraising. 

Our past years recipients include: 

• 2020: Amy Bekier, San Diego CA. San Diego Chapter Director and Walk & Roll Leader, Board of Directors Committee Chairperson 
• 2022: George and Jane Pollock, Tampa FL. Jane: (Former) Tampa Chapter Director, George: Board of Directors Committee Chairperson and new Chairman of the Board. 
• 2024: Jack Gerblick, Atlanta GA. Atlanta Chapter Director, Board of Directors Committee Chairperson 

This year’s recipient collects hats. More than fifty of them—each one a gift from her children, her mother, or passed down from her grandmother. Every hat tells a story. Every hat carries love, history, and a piece of who she is. And if you know her, you understand that she wears every single one of them beautifully. But the hats you see on the outside are only a glimpse of the many, many more she wears for all of us. 

She is a mother. A grandmother. A nurse.  

 

A patient navigator who meets people in their hardest moments and walks with them toward hope. A Gathering Place moderator whose warm welcome and gentle insight make every conversation feel like home.  A fierce advocate who has stood on Capitol Hill time and again for MDA’s Hill Day, representing our community with clarity and courage. A tireless champion of the PRMRP campaign that opened new doors for FSHD research. And a trusted advisor —whose wisdom, perspective, and steady presence guide us when we need it most. 

Behind that tender heart and those charming hats is a woman of remarkable tenacity, compassion, and grit. She stepped into this work after FSHD changed the course of her own career, and in doing so, she has quietly become one of the strongest leaders and brightest lights in our entire community. 

She brings hope to the weary. Lifts the newly diagnosed. And reminds every one of us why this mission matters so deeply. She doesn’t just volunteer—she shows up as her whole self, sharing her story so others can find theirs.  

The 2026 FSHD Society Community Hero Award goes to a woman who wears so many hats with such grace, strength, and love… Please join us in celebrating Ranae Beeker!