****ONE DAY ONLY RARE DISEASE DAY OPPORTUNITY TO DOUBLE YOUR DONATION BY AN ANONYMOUS DONOR****
On February 29th only, all donations made under our team name (Team CDKL5 Ride for a Cure) will be matched dollar for dollar up to $25,000 and donated to the IFCR. THAT MONEY WILL GO TOWARDS OUR $50,000 GOAL. Donations made at both CDKL5.com and the UPENN pages will be used to calculate the matching total.
Team CDKL5 Riding for a cure is excited to be a 2016 Rare Disease team in the 3rd Annual Million Dollar Bike Ride, Saturday May 7, 2016. The Penn Medicine Orphan Disease Center is the host of this event. The Million Dollar Bike Ride brings over 600 cyclists and volunteers to Penn’s campus to ride either 12, 33, or 73 miles starting in the city, and ranging across the Greater Philadelphia region. In two years, the MDBR’s 20+ teams have raised over $2 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds raised goes towards these pilot grants, with no overhead taken out.
We need at least 10 riders and volunteers, to join us in Philidelphia, so we can turn $50,000 into $100,000 in research! Look for announcements on donor matching opportunities as we work on raising our $50k.
Register now, remember to choose disease team CDKL5 so your registration and fundraising efforts count towards our collective fundraising. Volunteer information will come in the near future. Links to 2016 CDKL5 team and individual rider fundraising pages:
Kristin’s Page, local team representative
The Penn Medicine Orphan Disease Center (ODC) 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 ODC will reach beyond the borders of Penn and promote inter-institutional 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 ODC awarding $2.84 million for 10 grants to investigators across 10 different institutions.
All funds raised by Disease Teams through pledges are used by the ODC to expand the scope and depth of the pilot grant program. Following the event, a Request for Application (RFA) will be broadly distributed to the international scientific community requesting pilot grant applications to study diseases for which designated money has been raised. The ODC is securing philanthropic and corporate donations that will be used to match dollar-for-dollar money raised by the cycling participants. Scientific leadership of the ODC 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 ODC 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.
For questions regarding participation in the MDBR as a cyclist, volunteer or sponsor, or regarding the pilot grant program, please contact Samantha Charleston at firstname.lastname@example.org or (215)573-6822.