Shelly Meitzler is the Director of Community Support & Outreach at TSC Alliance, an internationally recognized nonprofit dedicated to Tuberous Sclerosis Complex (TSC), a rare genetic disorder causing tumors in various organs. With a personal journey spanning over two decades, Shelly's dedication stems from her own family's experience with TSC. As a parent of two children with TSC, Ashlin, and Mason, as well as daughter Mikenna, Shelly draws from her firsthand experience to offer invaluable insight and assistance to families navigating similar paths. Having volunteered in the TSC community for 14 years before joining the Alliance in 2017, she's committed to empowering families with resources and support to advocate for themselves and their children. Her unwavering drive and passion make her a powerful advocate in the TSC community. In this episode, hear from this passionate advocate who offers sage wisdom for all parents navigating the rare disease road.

EPISODE HIGHLIGHTS

• Background about Shelly and her family
• All about Tuberous Sclerosis Complex
• Navigating the very different paths of two children with TSC
• How Shelly became involved with TSC Alliance and her role today
• Advice for parents interested in getting involved with a patient advocacy group or non-profit organization
• The importance of community building and involvement in rare disease advocacy
• Shelly’s learnings and advice for other rare parents

LINKS

TSC Alliance

https://www.tscalliance.org/

https://www.facebook.com/tscalliance

https://twitter.com/tscalliance

https://www.instagram.com/tscalliance/

CONNECT WITH NIKKI

Website

https://raremamas.com/

Instagram

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

Email

info@raremamas.com