There is a lot going on lately and there has been some great media coverage putting the spotlight on FA research!
The FARA Energy Ball is three days of incredible support for FA research that ultimately funds about 1/3 of FARA’s research budget for the year. It includes the FARA/ USF Symposium where attendees learn about the latest FA research advances, the Patron Party to say thank you to all the great sponsors, and of course the extravagant ball on Saturday night. Read my brief review of the ball on the FARA Ambassadors Blog and check out the media coverage from Tampa Bay Channel 10.
Ride Ataxia Portland
The Portland ride was a huge success inviting many FA families and community members out for a day of fun and support for research. My favorite part of the event was seeing so many people on handcycles and trikes! Check out this review on the FARA Ambassadors Blog written by Michelle Huebner, plus these three news stories about my friend Sam Bridgman:
- Portland man with rare disease pedals for a cure
- Dozens ride to raise awareness about rare neuromuscular disease
- ‘If I can affect change in other people’s lives … that can be really powerful’
Ride Ataxia Philadelphia
Our most successful ride to date started off the week prior with a series of stories about the people behind the fight to cure FA.
- The first was a story about the lab of DR. Dave Lynch who is the principal investigator for FARA’s worldwide Collaborative Clinical Research Network in Friedreich’s ataxia. Dr. Lynch’s lab is a great example of the kinds of labs that are dedicated to FA research all over the world: Dr. Lynch: Pioneering Research of a Rare Neurological Disorder
- Next was a story about how the ride got started and the ideas behind what keeps it going: Athlete’s Diagnosis Inspires Multi Million Dollar Fundraising Ride
- Then a story about Liam Dougherty who is going to grad school at University of Pennsylvania and raising awareness and research dollars through his effort with the ride: Penn Grad Student Biking For A Great Cause
- At the end of the week, the day before the ride, PHL17 featured a story about Grace Haupt and the positive way she affects the people around her: 6th Grader’s Outlook On Life Inspires Those Around Her
These media stories and the power of the FA community provided a spark and fundraising went through the roof! We had 3 individuals over $10,000 and 3 teams over $20,000. At the end of the day we had 475 riders and $215,000 in fundraising!
During our first ride in 2007 there were only a handful of riders (just 3 of us for most of it) and our goal was to raise $30,000; it blew our minds when we hit $40k. 6 years later we have the power of friends, families and the entire FA community pushing with urgency and the sky is the limit.