Team Lilly Miss Sunshine 🌈🌤️

Team Cure CMD is participating in our 11th Million Dollar Bike Ride in June raising money for Collagen VI congenital muscular dystrophy (COL6 CMD) Money raised will be matched dollar-for-dollar (up to $30,000!) by the Penn Medicine Orphan Disease Center.

Lilly was diagnosed with Collagen VI Muscular Dystrophy in 2018. She is 9 years old, in grade 3, and is the sweetest goofball that you could ever meet.

Lilly LOVES puppies and is the self-proclaimed puppy kween. She wants to work with animals when she grows up. Lil is looking into a lucrative career as a professional dog sitter.

Lilly just got diagnosed with scoliosis and will be wearing a Boston Brace to stop the progression of the curve in her spine and to avoid surgery. In true Lilly fashion, Lil wants to share information about scoliosis with her classmates. She also wants to play a bangin’ drum solo on her brace using makeshift drumsticks (pencils).

Lilly has a hard time climbing stairs, running, and walking on uneven terrain. She uses the lift at school to avoid going up and down stairs all day. Lil gets tired easily and takes a lot of care to conserve her energy for the activities that she enjoys.

Despite her setbacks, Lilly goes through life truly happy and shares her infectious laughter. Lilly is a diamond in a rhinestone world.

Information on CMD's:

• Collagen VI Congenital Muscular Dystrophy is a rare disease, causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow.

• Some children never gain the ability to walk, while others lose the ability as they grow older.

• Affected individuals also may suffer from respiratory insufficiency, failure to thrive, contractures, and scoliosis.

There is currently no treatment or cure. This year we lost too many members of our CMD community to this disease. We are focusing Team Cure CMD's fundraising on Collagen VI CMD. Please consider donating. If that’s not possible, please share this page.

Check if your employer will match your donation (http://www.matchinggifts.com/uofpa/).

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. Please consider donating to our cause and being a part of transformative research. 100% of your donation, less platform fees, will go towards rare disease research.