Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager and Rare Mama Danyelle Sun

RARE MAMAS RISING- EPISODE 018

Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager, & Rare Mama Danyelle Sun

August is spinal muscular atrophy awareness (SMA) 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 changemaker. In this episode, Danyelle uses her ten years of experience to help us grow as advocates and elevate our advocacy.

EPISODE HIGHLIGHTS

• The journey to an SMA diagnosis for Danyelle’s two children, Ruby and Landon
• Tips on how to become stronger awareness builders
• Resources and action ideas on how to engage in state advocacy
• How to effectively utilize a social worker’s support and resources
• Expecting and awaiting goodness

LINKS & RESOURCES MENTIONED

https://www.curesma.org/

https://rareaction.org/

https://everylifefoundation.org/

https://globalgenes.org/

https://rarediseases.org/

https://www.rarediseaseday.org/

https://familyvoices.org/

https://www.ndrn.org/

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

info@raremamas.com