Hey everyone,
So on May 3rd I participated in the first ever fundraising cycling race put on by the University of Pennsylvania's Center for Orphan Disease Research called "The Million Dollar Bike Ride". Firstly I'll mention that they raised $1.4 milllion, well over their goal
I entered in the middle length race, 34 miles (55 kilometers) and had a challenging but great time! I enjoy riding bikes a lot, and this was my first major race, so I was quite excited!
In fact, after all the exertion and emotion that I put into this race, I got to my car right after finishing my race and wept. It was such a great feeling to be able to do something so challenging with POIS, sometimes it feels like I have to compromise with so much in my life. This was not a compromise, but a triumph for me!!!
I saw so many families there who were riding to support their own family members who had rare diseases. There was a big turn out for the race, over 500 people rode! Many groups had organized to raise money for their particular rare disease that they were supporting, and it was interesting to see all the different groups.
After I finished, I was also asked to speak on camera for UPenn about why I rode the race. At first, I got scared. I thought, "Should I talk candidly about POIS? Is it too explicit for this event? Is the subject too taboo?" I thought for a long moment and decided: I am here because there are people out there who want to help those with rare diseases conquer their illness. This race was put on for me. I don't give a damn if my particular illness happens to be explicit or taboo, I am going to come out right here and tell my story. So I did, and I hope that they get to finishing the editing soon so I can share it with you all and many others
After finishing I also got to speak with some of the organizers and family members of the scientists that run the center (and raced too!) They told me something very interesting: The UPenn Center for Orphan Diseases does a similar thing that NORD does. They set up funds for grants and create RFPs (Requests for Proposals) so that disease groups can raise money and find researchers who will help. The thing that I think will catch the attention of a few people here is that the disease group *gets influence on what specific thing gets researched*. The final call comes down to the board that runs the Center, but they take the disease group's request with high consideration. This is not an approach that NORD takes, to the best of my knowledge.
This is attractive, and along with the Center *matching donations 1:1*, UPenn could be the next place we might want to plan on for another potential study. Their minimum dollar amount is $25,000, which is matched by the Center for a $50,000 grant! Looks promising, especially given that Steph from NORD has hinted that NORD may not be providing the same service that we just took advantage of.
I left there with no concrete info, documentation and such, but the assurance that UPenn could help us out. I think following up with the Center would be a great move.
Here is the website:
http://www.med.upenn.edu/orphandisease/index.shtmlI could not find their bylaws or rules for grants and such on there, but they are pretty new. I believe the story is a big philanthropist for the university has a grandson with a rare illness, and decided to establish this center recently.
Again, I had such a great time, and if and of you other dudes out there want to come and be on Team POIS next year, let me know! You don't need to be a superstar athlete, this was a fun event and you are welcome to do it at a casual pace. In fact, the majority of riders did a much shorter course (11 miles) and were just there to support each other! I am so glad I went, and I will go again next year!
