EP18 – Rare Mamas Rising-Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager, & Rare Mama Danyelle Sun

Rare Mamas Rising Episode 18

August is spinal muscular atrophy (SMA) awareness month, and in honor, my guest is SMA mom Danyelle Sun. Danyelle has served Cure SMA as a board member and Wisconsin chapter officer, building community and championing a better future for people living with SMA. Currently, she works as the Cure SMA Social Work Manager, providing support to families, educating elected officials about SMA, and advocating for newborn screening. Not only is Danyelle a passionate advocate for the SMA community, but she’s also a dedicated advocate for the entire rare disease community. She serves as the Wisconsin Rare Action Network® Volunteer State Ambassador and has successfully built a strong network of over 280 advocates throughout Wisconsin. She works tirelessly with state legislators and their staff on numerous policy initiatives affecting the rare disease community. Danyelle is making such an impact on the rare disease community that in 2021 she received the NORD Rare impact award. Danyelle is a dedicated awareness-builder, a hard-working advocate, and a true change maker. In this episode, Danyelle uses her ten years of experience to help us grow as advocates and elevate our advocacy.