Ride for Anaya Grace

Join Team Cure CMD to raise money for Collagen VI CMD research! All money raised through donations goes to research grants for this rare disease. Once we raise $20,000, the Penn Medicine Orphan Disease Center will match our fundraising dollar for dollar up to $30,000!

As most of you know, Anaya was diagnosed with COL VI Muscular Dystrophy in 2017.

She is almost 8yo and is a bright and joyful girl.

She is able to walk short distances and uses a wheelchair and walker at school.

Anaya can not climb curbs or stairs, she can’t jump or skip. She can not stand up from the floor or go from standing to sitting unassisted.

Despite all this -she never complains. Is always smiling and truly happy.

She is our greatest gift.

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.

We are focusing Team Cure CMD's fundraising on Collagen VI CMD.Please consider making a donation! Check if your employer will match your donation (http://www.matchinggifts.com/uofpa/), share this page with others, and join us for our local event!

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 will go towards rare disease research.