SIGN UP AND DONATE TODAY FOR THE ATL WALK & ROLL!
The money I'm raising 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). 17 years ago, my older sister, Carden, became one of those patients. For years doctors told my parents it was nothing and after many misdiagnoses, she finally got her answer.
Facioscapulohumeral dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. I've watched this disease take away my sister's ability to stand steadily on her own, walk, run, jump, or throw, it's made smiling, chewing, writing, lifting, and grabbing difficult among so many other things. However, I can't pretend that this disease is all bad because it's also turned my sister into a ROCKSTAR!
Carden has a new set of legs in the form of a WHILL electric wheelchair. "Free Whilly," as we like to call it, has given her more freedom than ever before. She contacts Atlanta officials regularly to help get curb cuts and crosswalks installed and broken sidewalks repaved and potholes repaired. Thanks to WHILL, Carden is now a world traveler who tests different cities on their handicap accessibility.
God works in ways we don't always understand and if I had the power to cure FSHD I would have done it yesterday... But even though certain doors have closed for Carden and anyone else living with FSHD, God opens windows. I'd like to think that this Walk and Roll is a big ole' window. This disease is bringing an entire community together to fight for a cure and support the ones they love!
My hope is that this event gives people HOPE and a reason to celebrate. That a cure is possible and foreseeable. That your fundraising efforts are going towards REAL research and treatments that we hope will be available by 2025. Available treatments for people like my sister! So please, join my team, walk with us, donate towards a great cause, get involved with the FSHD Society, find a local chapter near you, learn more about the disease, connect with others families, help someone get diagnosed, do something, because if there's a WHILL, there's a WAY!
THANK YOU! From the bottom of my heart,