Who wants to do a bike ride for rare diseases??

[Nightingale]

Hi guys,

I found out about something called The Million Dollar Bike Ride:

The Center for Orphan Disease Research and Therapy at the University of Pennsylvania and Rare Disease Cycling are proud to announce The Million Dollar Bike Ride 2014 - our first annual cycling event to raise funds for rare disease research. May 3, 2014 Start time is 9:00am.

This is a fully supported ride, with cycling marshals and rest stops every 10-15 miles that offers 3 routes ? 11, 34, and 73 miles ? each of which start and finish in Philadelphia on Penn?s campus.

The Million Dollar Bike Ride will raise research funds for the Center for Orphan Disease Research and Therapy at Penn who will match the money raised by each team and then award a research grant for each disease.

I want to do this! I bike often, and I would like to do something to raise awareness for POIS, and even raise some funds! We can register as an "independent" team and either raise money ourselves, or just pay to participate and say we did something together

I know there are quite a few people who aren't too far from Philadelphia, and I would be willing to make the trip even just to race myself and get the jersey that says "Rare Disease Cycling"! If we get going now, maybe we can get some family and friends to donate money now. Penn is offering to match donations, so we would likely get some money. It says on the websites that the "independents" will have the money split among themselves.

I want to do something like this that helps me feel more like I'm "out" and visible. Too long it's been invisible that I've had POIS, and I want to be able to share my pictures and acheivement with my friends. Who else is interested??

Details (and the cool jersey you get!): http://www.milliondollarbikeride.org/may-2014-fundraiser-cycling-event-details/

Here is the registration form: https://secure.www.alumniconnections.com/olc/pub/UPNM/event/showEventForm.jsp?form_id=165527

[poisioq]

I think it's a great idea but I can't, I live to far away

[Daveman]

How is the money divided up? Does each member register for a particular cause? The POIS cause would be created and depending on the number of POIS participants, the amount is determined?

[Nightingale]

I've emailed the race fundraising coordinator, so I'm hoping I'll have a better understand of this soon because I'm not totally clear on this. If they match 1:1 funds raised, I don't see a bad outcome for me, or hopefully us! I'd be awesome to have a buddy to bike the race with, would be the first time I'd be meeting with another POISer (unless things get moving really fast at Rutgers!)

[Nightingale]

Ok, I clearly misread the information (not to surprising, I misread things every day...) and the "independant" category just splits your funds raised among all the major groups registered. We would need to have $17,500 to get POIS as a major group ($35,000 total with UPenn matching the donation).

This still wont change my desire to ride this race! I like to challenge myself athletically and I want to participate in an event that raises money and awareness for rare diseases! It costs $55 to bike the race, and I get to designate where the donated portion of my money goes. I will pick the Penn Scientists for Orphan Disease Research (NORD is also active in the "orphan" area, lobbying for Orphan Drugs that fail to be profitable for mass production to remain available).

Come on, someone has gotta have a bike, a good attitude and wants to meet another POISer!