UPenn Research Grant Initiative

 2016 MDBR Research Grant Awards

The Orphan Disease Center is proud to announce 31 grants funded by proceeds from the 2016 Million Dollar Bike Ride to 21 institutions worldwide, ranging from $40,000 to $101,000 from funds raised by 23 disease-specific cycling teams.

See here for a complete list of the research grant awards.

Click here to learn more about the MDBR-Million Dollar Bike Ride

Exciting words from Bruce Friedman:
Hello everyone! I hope this note finds you all happy and healthy as we approach the New Year.
I'd like to start by sharing some exciting news, and that is, thanks in large part to your support and generosity, Team Josh & the DCO Riders along with Penn's Orphan Disease Center has awarded its first grant towards research of Dyskeratosis Congenita. The award is for $51,000 and the research grant went to Dr. Suneet Agarwal at Boston Children's Hospital to advance his research and implementation of a bone-marrow treatment protocol that is tailored specifically for DCO patients. This is big stuff and this grant will definitely boost Dr. Agarwal's impactful research.
One thing I learned through the grant process is that there are a lot of opportunities that we can advance with these grants in the future. To that end, Team Josh will be riding again in 2017, the Million Dollar Bike Ride is scheduled for Saturday, May 20th. Last year we had a small committee that was very helpful in promoting Team Josh and I'm planning to do the same early in the New Year. If you'd like to participate, please let me know.
I'd also like to take this opportunity to share some of the work DCO (Dyskeratosis Congenita Outreach, Inc.) has done over the summer. As part of a Masters program I am completing at Penn, I along with my classmate Bob Biglin worked with DCO's board and outlined a strategic plan and vision for DCO to expand its capacity in delivering it's mission to a growing population of patients and families effected by DC. DCO's accomplishments over the past ten years have been herculean as they have published a 400-page Clinical Guideline document, established a 501 c(3) with a world class medical advisory committee with top doctors and researchers, provided a bi-annual camp experience to their families at Camp Sunshine in Maine and supported hundreds of individuals coping with a chronic and often terminal illness. This has been done with a tiny board of those directly impacted by DC, each stretched physically, emotionally and financially. This has also been done on a shoe-string budget. It's all amazing. Now is a critical time for DCO as their population and mission is expanding and as they've gained traction in many areas, there is a greater need for support from a volunteer, board structure and financial resource perspective.
This is where I ask for your even greater help and support in helping DCO deliver it's mission. Below is a link to DCO's web-site. On the top right is a "Donate" button. As you make your year-end donations to your favorite charities, please consider helping DCO. They continue to have a great impact on a very under-represented population and you can have a direct impact towards them growing awareness, research and support for those suffering from this rare disease. Please understand that the generous funds raised towards the MDBR goes directly to fund research for DC, however it does not go to DCO's patient advocacy group. Of course, both missions are extremely important and impactful and I am grateful for all that you have done to help these causes.

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