Maryland 4th grader Lily Brown and Virginia 1st grader Divia Parks were both born with Collagen VI CMD, a rare and progressive neuromuscular condition. CMDs are a group of genetic diseases which cause skeletal muscles to break down faster than they can repair or grow. A child with CMD may have various physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older.

Divia and Lily are both extremely outspoken, adventurous, silly and motivated to tackle every adventure life has to offer with the exception of salads. These girls simply do not like salads. Lily's and Divia's brain and heart are just like yours - yet their muscles are not. They are weak.

Divia is a part-time wheelchair user mainly to preserve her energy and help her keep up with friends when walking long distances. She has undergone bilateral heel cord surgery to assist in aiding her balance as well as preserve her mobility as long as possible. She is very much looking forward to the Wheel-a-thon and Million Dollar Bike Ride because who doesn't like to get places fast! Her daddy is a Team Captain for the Million Dollar Bike Ride and she is pretty sure she is going to beat him at the Wheel-a-thon. Not that it's a race.

Lily has never been able to run, jump, or climb stairs. But she can kayak and stand-up paddleboard, and you will see her flying along in the Wheel-a-Thon on her recumbent trike! She, like Divia and others with her condition, is smart and excited to learn. Lily has a power-assist wheelchair which she loves as it gives her freedom. Lily is fortunate to have a world-class physical therapy and medical team helping her. Our chief concern right now is the effect her condition can have on the respiratory muscles.

By donating, you are giving children like Lily and Divia a fighting chance!

This Wheel-a-Thon is affiliated with U Penn's 6th annual Million Dollar Bike Ride (MDBR), a fundraiser in Philadelphia for rare disease research (www.milliondollarbikeride.org). We have partnered with Team Cure CMD, a MDBR team raising money for Collagen VI CMD research. U Penn ensures 100% of raised funds goes towards research - zero overhead. This year, U Penn will match up to $30,000, so every penny counts twice! This is a huge boon for rare diseases which struggle to find funding for research.

Last year, thanks to friends and neighbors like you, our inaugural Wheel-a-Thon raised a whopping $20,000 of the $100,000 raised for Team Cure CMD. These funds were granted to two research projects investigating CRISPR gene editing as a treatment for Collagen VI CMD. Let's reach this goal again!