Million Dollar Bike Ride for Orphan Disease Research Fund
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Fundraising goal $50,000.00
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The Million Dollar Bike Ride

Come join us!
The Penn Medicine Center for Orphan Disease Research and Therapy (CODRT) invites you to participate in a Philadelphia based bicycle ride on May 3rd, 2014 to raise $1 million for research in rare diseases. 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 -- 11, 35 and 73 miles. The ride starts at 9:00am.
About the CODRT
The CODRT 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. In order to assemble a critical mass of intellectual and patient resources for any one disease, the CODRT will reach beyond the borders of Penn and promote interinstitutional collaborations/ partnerships. One mechanism by which this will be achieved is through a pilot grant program made available to the international rare disease communities which will build on our early grant programs that are focused exclusively on research related to mucopolysaccharidosis (MPS) type 1. The first round of this pilot grant program resulted in the CODRT awarding $2.84 million for 10 grants to investigators across 10 different institutions. The scope of this pilot grant program will be increased in part through funds raised from this bicycle benefit event.

All funds raised by Disease Teams through pledges will be used by the CODRT to expand the scope and depth of the pilot grant program that so far has been limited to MPS 1. Following the event, an RFA will be broadly distributed to the international scientific community requesting pilot grant applications to study diseases for which designated money has been raised. We are in the process of securing philanthropic and corporate donations that will be used to match dollar for dollar money raised by the cycling participants. Scientific leadership of the CODRT and its extramural advisors will review the applications and make awards to those of the highest scientific merit which address the specific topics outlined in the RFA. The CODRT will disperse the money to grantees and manage progress of the science and spending on the award. Progress reports will be sent to the Disease Teams.
Support rare disease research!
If you would like to make a donation to our event, simply click on the red "donate" button to the left or the blue "donate now" button above, and then indicate in the "message" section of the donation page which Disease Team you would like to support with your donation. The registered teams are listed here:
--Bike to end Duchenne
--Pitt Hopkins Pedalers
--Spin Factor for Hemophilia
--Team NTSAD
--Team FARA
--Team ALD
--Team Cure ML4
--The LAM Foundation (lymphangioleiomyomatosis)
--CTC NPC (Niemann Pick Type C)
--Rasopathies Network
--Homozygous Familial Hypercholesterolemia (HoFH)
--Congenital Hyperinsulinism International
--Penn Scientists for Orphan Disease Research
--Team MPS
--Team Cure CMD

Or, if there is not a specific team you wish to support, we will distribute your donation equitably amongst the registered teams.
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PGPHelp@exchange.upenn.edu | Julie Spaeth, Executive Director, Services | 215.898.6198
3535 Market Street, Suite 750 Philadelphia, PA | Superuser