The Million Dollar Bike Ride:

Help Us Raise Money for RASopathies Research



Come join us!

The University of Pennsylvania (Penn) School of Medicine Orphan Disease Center invites you to participate in a Philadelphia-based bicycle ride on May 9th, 2015 to raise $1 million for research in rare diseases including the RASopathies. The event is the only cycling fundraiser to start and end in the city of Philadelphia, with the start/finish line at Highline Park (31st and Chestnut) on Penn's campus. There are 3 route options -- 12, 35 and 75 miles. The ride starts at 8:00am. You must be 16 years or older to participate as a cyclist.


About the Penn Orphan Disease Center

The Penn Orphan Disease Center was established to promote the development of therapies across a broad range of orphan diseases. Each of these diseases by definition is rare but collectively represents a substantial health care burden. Most orphan diseases manifest in children with premature mortality and/or significant disability and little is available in terms of treatments. The Penn Orphan Disease Center has created this fundraiser to create pilot grants to study certain rare diseases. The RASopathies have been chosen as a group to receive a grant that will be distributed to the international science community.  100% of monies donated will go towards a grant for the RASopathies, if you register under team RASopathies Network. 100% of the money raised under team RASopathies Network will be matched 1:1 by Penn up to $50,000 as long as we raise at least $20,000.


Our grant stipulations for this year:

There are numerous anecdotal reports of individuals with a RASopathy having significant pain in various joints and parts of the body, but this has not been formally addressed.


This yearŐs grant will be awarded to academic researchers to initiate or advance research in further understanding of the pertinent clinical features that impact all three conditions (CFC, Costello syndrome (CS) and Noonan syndrome (NS)).  The research should include, but would not be limited to identifying the etiology, incidence, assessment, and management of pain in individuals with a RASopathy.



Register to Ride with Fundraising

Registration is $25 and requires a minimum fundraising of $200 by May 9th. Perks will include a professional cycling jersey and a hearty meal with local brews after.


IMPORTANT: When setting up your giving page under Team RASopathies Network USA, please read the PDF on this link to help set up your giving page.



Register to Ride without Fundraising

Registration is $60.  After April 1st it will increase to $80.  Perks include a t-shirt, a hearty meal and local brews after.


Register here and select Team RASopathies Network for the Disease Team on the Event Information page :



Make a Donation towards RASopathies Research

To make a donation to go towards creating a research grant for the RASopathies, please go to


Participate Virtually

CanŐt make it to Philadelphia? No problem!! Create a giving page here


IMPORTANT: When setting up your giving page under Team RASopathies Network USA, please read the PDF on this link to help set up your giving page.



Questions? Please email Lisa Schill at


Thank you so much for your support that is so greatly needed!!!