Social Fundraising

Million Dollar Bike Ride - RASopathies

Million Dollar Bike Ride

Truly a special event. Not only are multiple rare disease groups riding in this event but the money raised will be matched by UPENN to support rare disease research. No amount is too small; your $5 = $10, $10= $20, & so on.

Vermont Rare

Vermont Rare is a non-profit organization established to support patients, families and caregivers affected by rare disease. Our goal is to be a voice for the rare disease community in Vermont and beyond; to educate and raise awareness about the impacts of living with rare disease on patients, families, caregivers and communities; and to provide financial assistance and support to those affected by rare disease.

Shane

Shane is 11 and lives with a rare disease. CFC, which is in the RASopathies family affects cell development and growth along with many systems of the body. Like many other rare diseases, there is no cure, no treatment. Yet this does not define who Shane is. He is funny, smart in his own way, resilient, outgoing can takes every day as it comes.

Important Facts:

No donation is too small, here's why!

7,000 rare and genetic diseases, 50% of people affected are children.
Rare disease impacts more people then AIDS and cancer combined
Total deaths from diabetes are projected to rise by more than 50% in the next 10 years.