Academy of Neurologic Physical Therapy Podcast · Academy of Neurologic Physical Therapy

DD SIG Navigating the Path Episode 4: Huntington's Disease Society of America

·29 min·1 clip

HDSA’s Team Hope walk and HD Education Days are two local events Gia says people love most.

1. Academy of Neurologic Physical Therapy’s DD SIG episode focuses on Huntington’s Disease Society of America support in the Navigating the Path series. 2. Ken Venaco, a physical therapist at Brown University Health and a DDSIG podcast committee member, interviews Gia Minoni, the greater New York and Long Island chapter social worker for HDSA. 3. The episode asks what HDSA does for people with Huntington’s disease, their caregivers, and clinicians in the New York region. 4. Gia says she started the role in September 2024 and has been active in the Huntington’s disease community since 2012. 5. She says relatives of her own are battling Huntington’s disease, which is part of why the position matters to her. 6. Gia explains that the HDSA helpline routes regional calls to her so she can support families in greater New York and Long Island. 7. She says her work includes connecting people to physical therapy, occupational therapy, speech therapy, and other care resources. 8. Gia names Columbia University and Stony Brook University as the New York HDSA centers of excellence. 9. She says those centers automatically connect families with speech pathologists, physical therapists, neurologists, and genetic counselors. 10. Gia notes that she is building a resource guide of trusted local professionals who have worked with Huntington’s disease. 11. She says the guide depends on speaking with community members and medical professionals to identify usable referrals. 12. Gia describes support groups run through Hey Peers, the platform HDSA uses for registration across the U.S. 13. She says the virtual support groups include separate options for HD diagnosed and symptomatic people, HD positive not yet symptomatic people, gene negative people, at-risk people, and youth. 14. Gia says the National Youth Alliance is a sister branch of HDSA focused on youth impacted by Huntington’s disease. 15. She describes NYA Day at the national convention as a place for young people to meet others in the same situation. 16. Gia says HDSA events are designed so people can walk into a room and not have to explain Huntington’s disease from scratch. 17. The interview style is conversational and practical, with Ken asking follow-up questions about maps, local providers, youth programs, and therapist education. 18. Gia’s tone is direct and resource-oriented, and she uses concrete examples such as team walks, education days, and a resource guide. 19. People supporting Huntington’s disease families in New York or looking for HDSA resources would benefit most. 20. Listeners seeking disease-specific clinical detail beyond care navigation may find it too resource-focused.

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