Good Morning ScubaBoard.
I am riding in a charity cycling event put on by UPENN called the Million Dollar Bike Ride on May 7th.
www.milliondollarbikeride.org
Its a pretty cool event and a HUGE opportunity for research teams of orphan diseases to generate much needed funding. UPENN matches the fundraising gathered by the organizations dollar for dollar if the organization raises at least $20K. 100% of the funds raised goes directly to research for the disease team...UPENN keeps nothing.
I am riding for Team CDKL5, which benefits the International Foundation for CDKL5 Research. My oldest daughter Bristol is 5 years old and is affected by this condition. Because so few people worldwide are affected by CDKL5, the research into viable treatment options and hopefully an eventual cure falls squarely on the shoulders of the families of those affected. If you are not familiar with how much that costs....its a fortune. If you are interested in specifics about CDKL5 disorders, you can either PM me or go to www.CDKL5.com .
Long story short, I have setup a fundraising page for the ride http://givingpages.upenn.edu/RidingforBristol ,
and wanted to reach out to the ScubaBoard community. If you are inclined to donate, it can be done directly through the giving page above. If you would like to share the link via social media....please do so. We could use all the exposure possible.
For those that live in or near Philly, you can also help by merely joining the event as a rider. You can register as a participant via www.milliondollarbikeride.org . When you register, you will be prompted to select a disease research team. If you select "Team CDKL5", your ENTIRE registration fee ($60) is considered part of the IFCR's fundraising total....Meaning that money goes directly to CDKL5 research x2. There are 3 distance options for the ride...11, 33 and 73 miles, so don't think you need to be Lance Armstrong or Floyd Landis to participate.
Thanks for your time,
Tom Crist
I am riding in a charity cycling event put on by UPENN called the Million Dollar Bike Ride on May 7th.
www.milliondollarbikeride.org
Its a pretty cool event and a HUGE opportunity for research teams of orphan diseases to generate much needed funding. UPENN matches the fundraising gathered by the organizations dollar for dollar if the organization raises at least $20K. 100% of the funds raised goes directly to research for the disease team...UPENN keeps nothing.
I am riding for Team CDKL5, which benefits the International Foundation for CDKL5 Research. My oldest daughter Bristol is 5 years old and is affected by this condition. Because so few people worldwide are affected by CDKL5, the research into viable treatment options and hopefully an eventual cure falls squarely on the shoulders of the families of those affected. If you are not familiar with how much that costs....its a fortune. If you are interested in specifics about CDKL5 disorders, you can either PM me or go to www.CDKL5.com .
Long story short, I have setup a fundraising page for the ride http://givingpages.upenn.edu/RidingforBristol ,
and wanted to reach out to the ScubaBoard community. If you are inclined to donate, it can be done directly through the giving page above. If you would like to share the link via social media....please do so. We could use all the exposure possible.
For those that live in or near Philly, you can also help by merely joining the event as a rider. You can register as a participant via www.milliondollarbikeride.org . When you register, you will be prompted to select a disease research team. If you select "Team CDKL5", your ENTIRE registration fee ($60) is considered part of the IFCR's fundraising total....Meaning that money goes directly to CDKL5 research x2. There are 3 distance options for the ride...11, 33 and 73 miles, so don't think you need to be Lance Armstrong or Floyd Landis to participate.
Thanks for your time,
Tom Crist
