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FARAFARA Cure FA

FA Woodstock and Ride Ataxia Chicago 2014

imageThe 5th annual FA Woodstock was held Thursday, July 17, 2014 – Saturday, July 19, 2014. It is a three day event hosted by the Hook Family at The Flying H Ranch in La Porte, Indiana who graciously open their home up for people affected by Friedreich’s Ataxia (FA) and their families to enjoy a variety of activities. The 21 acre ranch is home to lots of livestock including cows, horses, a mini horse, bunnies, a goat, a pig, mini donkeys, dogs, a bird and probably a few more species unmentioned. The Friedreich’s Ataxia Research Alliance (FARA) and The Children’s Medical Center of Philadelphia (CHOP) staff came out to the event to conduct medical research that would usually take half a year to collect.  

imageBut because the FAers and their families didn’t think twice about rolling up their sleeves to give blood and skin biopsies as well as cheek swabs, all that data was collected over the course of this event – amazing! 70 blood samples, 80 cheek swabs, 12 skin biopsies, 12 hearing tests and 10 natural history tests were taken to help move research further. Check out the schedule of event details and I hope you see the everlasting fun we all had in the pictures. Save the dates for next year! July 16-18, 2015! louis

Woodstock2014Special shout to Louis! This courageous young boy traveled from his home in England by himself to stay with another FAmily (The Simpson’s) who wanted to have some fun before he has to have spinal fusion surgery. You are in our thoughts and prayers! We love you!
imageRide Ataxia Chicago took place on Sunday, July 20th, the day after FA Woodstock. Emily Young and her family contribute greatly to the success of this ride. Their friends, family and community all come together for this event and either volunteer, donate or ride in honor of Emily. Her team totaled 91 riders, all sporting the “Forever Young” T shirts. Her team t-shirts were seen on the 4, 12, 32 and 50 mile routes, in addition to the registration table, food tent, start and finish line and everywhere else! What an impact they made. Overall, the ride welcomed 320 riders who raised $65,000 for FA research.

Something super special took place- Mark Egeland, general manager at Catrike (aka who manufactures these super awesome 3-wheeled recumbent trikes so people with different types of physical disabilities can still be active) surprised us all when he showed up ready to ride. His passion, dedication and commitment towards the FA community is so appreciated!

Emily

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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