We are honored to introduce the 2026 Rare Disease Scholarship recipients: four remarkable individuals whose resilience, advocacy, and commitment to the rare disease community truly stand out.
Each recipient brings a powerful story of perseverance and purpose, turning personal challenges into meaningful impact for others.
Meet Kerry, Sarcoidosis Advocate
Kerry has lived with sarcoidosis for over 20 years, with the disease affecting multiple systems including her lungs, skin, joints, and autonomic nervous system. After years of having her symptoms dismissed, she became a fierce advocate for earlier diagnosis and awareness. She organized Westchester, NY’s first Sarcoidosis Walk ‘n’ Roll, bringing together more than 100 participants. She now shares her voice as a Sarcoidosis News columnist. In 2024, she published Kaleidoscope: Rare Disease Stories, donating proceeds to the National Organization for Rare Disorders (NORD) to further support the community.
Meet Sophie, Myasthenia Gravis Artist
Sophie, 24, was diagnosed with myasthenia gravis following a life-threatening ICU stay due to respiratory failure. Before her diagnosis, she spent years as a freelance muralist, painting 35-foot walls while unknowingly managing symptoms like leg weakness and breathing difficulties that were often misattributed to anxiety. Today, she continues her physically demanding art career while raising awareness and offering encouragement to others navigating rare disease diagnoses.
Meet Heather, Devoted Muscular Dystrophy Mom
Heather’s journey began when she and her husband adopted two young brothers, now ages 7 and 10, who were both diagnosed with muscular dystrophy after a broken leg led to genetic testing. In just months, their family adapted to significant changes in care, including mobility support and respiratory therapies. Through it all, Heather has built a strong network of support, homeschooling her children to meet medical needs while mobilizing her community. Within three months of diagnosis, their MDA Muscle Walk team placed third in fundraising, and they continue to lead local efforts to raise awareness and support.
Meet Madison, Huntington’s Disease Advocate & Wife
At just 20 years old, Madison’s life shifted when she learned her husband carries Huntington’s disease, creating a 50% inheritance risk for their children. Faced with limited guidance, she took initiative, researching, securing specialized care, and deepening her understanding of the disease. As a nursing student, she has brought attention to the psychiatric and behavioral aspects of Huntington’s, and now actively advocates through HDSA Hope Walks. Madison is transforming uncertainty into knowledge, advocacy, and hope for her family and others.
We are proud to support these individuals as they continue to make a lasting impact in the rare disease community. Their stories reflect the strength, compassion, and determination that drive meaningful change.