Help us find a cure for FSHD!

Team Penwell

Team Penwell

Join us for the 2nd Annual NC Walk & Roll Saturday, October 5th at NC State - Talley Student Union. Registration opens at 9 am with the event starting at 10 am. As many of you know, FSHD has directly impacted our family. Last year's Walk and Roll was a fantastic day of getting together with friends and family to raise awareness and to rally support around our daughters and all of those impacted by FSHD. We hope to see many of you in-person at this year's event!

Event Details -

Thank you for your support! - The Penwell Family

The money raised by participating in this Walk & Roll is supporting programs and funding research that will directly impact patients and their families living with FSH Muscular Dystrophy (FSHD).

Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. It affects an estimated 1 in 8,000 individuals or 870,000 people worldwide. Around 20 percent will need a wheelchair by age 50. Over 70 percent experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope.

The FSH Society is a research-focused patient organization that has catalyzed the global research community. We have funded every major advancement that has propelled us into the era of treatment discovery and development to end the pain, disability, and suffering caused by FSH Muscular Dystrophy (FSHD). The FSH Society has transformed the landscape for FSHD research and is the world’s leading patient advocacy organization committed to making sure that no one faces this disease alone.

Our Vision: A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)

Our Mission: Find treatments and a cure for FSHD while empowering our families

Our Strategies:
- Accelerate the development of treatments and a cure for FSHD
- Increase, engage, and empower our stakeholders
- Aggressively leverage and expand resources to support our Mission

Our Core Values: Research | Community | Urgency

Please visit the FSH Society website ( to learn more about FSHD, ways to get involved, and everything that is happening!


raised of $2,000 goal

4 Participants

Join Our Team

Recent Donations

1. Stephanie Barefoot
2. Alexis Winn
Love to you and your family, Alexis
3. Todd Johnson
4. John Maurer
Go team!
5. Anita Maurer
We continue to pray for a cure.
6. David Stephenson
Congrats Penwells! See you on the 5th.