Team Lilly Miss Sunshine 🌈🌦️

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases and I'm excited to participate. Please consider donating to our cause and being a part of transformative rare disease research.

In 2025, your donation will directly benefit Team Cure CMD. Your donation not only helps further rare disease research, but also benefits patients and families in our rare disease community. The difference you can make is immeasurable. Thank you for your support!

Team Cure CMD is participating in our 12th Million Dollar Bike Ride in June and is raising money for Collagen VI congenital muscular dystrophy (COL6 CMD).

Lilly was diagnosed with Collagen VI Muscular Dystrophy in 2018. She is 10 years old, in grade 4, and is the sweetest goofball that you could ever meet.

Lilly LOVES puppies and wants to work with animals when she grows up. Lil is looking into a lucrative career as a professional dog sitter.

Lilly got diagnosed with scoliosis last year and has been wearing the Boston Brace to stop the progression of the curve in her spine and to hopefully avoid surgery.

Lilly has a hard time climbing stairs, running, and walking on uneven terrain. She uses the elevator 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 such as going for walks and going on the swings at the playground.

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.