What if the only thing standing between you and a life-saving treatment was a price tag? For many living with Spinal Muscular Atrophy, that’s the reality—Spinraza, one of three FDA approved treatments for SMA costs about $425,000 per injection. Beyond the medical challenges, families face crushing financial barriers and questions of accessibility that differ drastically from country to country.
This week, we hear from brothers Derek and Justin. Justin lives with SMA type 1, and Derek—his brother and caregiver—has transformed their experience into a mission. He founded SOAR, a nonprofit dedicated to supporting the SMA community by providing community outreach and support. Under SOAR, Derek created the SMA Support Mates Program, which connects kids and young adults with older mentors who know exactly what it’s like to live with SMA.
Together, we talk about the urgent fight for affordable treatments, the stark contrast in accessibility between the U.S. and Vietnam, and how community can light the path forward.
This interview has been edited from an episode of The Disability Myth. If you would like to hear the longer program, check out the podcast episode on YouTube, Spotify, Apple Podcasts, and Amazon Music.
This program is hosted and produced by Dominick Trevethan.
Useful links:
SOAR’s official website: https://www.sma-awareness.com/
SMA Support Mate Program: https://forms.gle/tdDS1iVPa27tbooq5
SOAR Instagram: https://www.instagram.com/soar.sma_awareness?igsh=MWt4dTBmeW5uYzByYw==
SMA Support Mates Program
The post SOAR: Advocating for SMA – Pushing Limits – September 5, 2025 appeared first on KPFA.

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