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FARAFARA Cure FA

Million Dollar Bike Ride 2015

On May 9, 2015, Team FARA had a team in The Million Dollar Bike (MDBR) to benefit the Rare disease Research Center at University of Pennsylvania.  We had team members on the 12 mile and the 33 mile route plus we had a table post ride with FARA/rideATAXIA info.  Team members included Cindy Timbie, Justin Timbie, Dr. Dave Lynch, Pat Ritschel, Brie Von Hausch, Liam Dougherty, and Sarah Gelbhard.

I had the honor of riding with Dr. Dave Lynch, FARA Board Member Pat Ritschel, and Justin Timbie.

 

It was a tough ride and well organized with 500 participants total, plenty of food, and plenty of police support on the road.  However this event was about much more than a bike ride.  I met two different families affected by different debilitating diseases, both with worldwide populations LESS THAN 500.  Those numbers can easily leave a person feeling powerless.  However, there are 7,000 rare diseases and if considered as a whole, Rare Disease affects 25,000,000 Americans, that's 1 in 10 people. 

This ride was about uniting the rare disease community and using our numbers to our advantage.  I can imagine that it is really hard to fundraise for a disease with a population less than 500 in the world.  However through the MDBR, if a disease team raises at least $20,000, the Rare Disease Center at Penn will match it and fund a research project in that disease, making it more feasible to take a step forward and start building momentum.  This was an empowering event.  Alone we are rare, together we are strong.

I got this card from a little boy who was helping out at the rest stop 19 miles in.  It hit me right in the gut and is now on my wall in my office.  One of my favorite cards ever.

 

 

 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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