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FARAFARA Cure FA

FA Woodstock and Ride Ataxia Chicago

By Mary Vida

I had the pleasure to attend my first Friedreich’s Ataxia (FA) Woodstock a couple of weeks ago (July 17-20, 2013) at the Flying H Ranch in La Porte, 994249_10201599759138663_2035621459_nIndiana, which is the Hook’s family property. The Hook FAmily is a pillar of the community.

Wonderful volunteers in the Hook’s community pitched in to help create an awesome environment that is geared towards having fun and just being yourself, despite the challenges of FA.

There were many activities to participate in: yoga, tie-dying t-shirts, fishing, mosaic tiling, swimming, socializing, card playing, music entertainment, firework display, launching of Chinese lanterns, Ice-Cream machine to make cones, and the meals were FAbulous.

 

The FARA/CHOP FA research team traveled from Philadelphia to set up shop and collected 72 blood samples, 81 cheek swabs, 9 skin biopsies as well as hearing tests. Samples were sent to 4 different labs across the country to help advance clinical research in FA.

Some families camped on the property in tents or their RVs, while others chose to spend their nights staying at nearby hotels.

To the Hook family, friends & community: This FARA Ambassador cannot thank you enough for all you do- truly a special weekend.

Mary

 

Ride Ataxia Chicago

 

By Kyle Bryant

I too, had the opportunity to attend FA woodstock and it is always an empowering feeling to hang out with others and know that we are not alone in this.  Thank you Hook FAmily.

The day after FA Woodstock, about 90 miles to the West, Ride Ataxia Chicago takes place in Channahon, IL.  This was the second annual Ride in Chicago and the event is gaining momentum as it grew by 30% in number of participants compared to last year.

The largest portion of the 300 participants came from Gibson City, IL in support of Emily Young.  Gibson City is a long way away in Central Illinois but Team Emily still managed to recruit the largest team the Ride Ataxia program has ever had, 76 Team Members!  They also had the largest fundraising total of any team so far this year at over $20,000!  What a powerful team!

 

A few days before the ride I was hanging out at FA Woodstock with my friend Carli who was talking about riding the 4 mile course at the ride.  She had done the 4 mile course in 2012 and she planned to perhaps do two laps this year.We are all in this together! - George Perzee never left Carli's side and encouraged his teammate to the finish line. We are all in this together! - George Perzee never left Carli's side and encouraged his teammate to the finish line.  I told her that she should try to push it and do the 12 mile course and just see what happens.  Carli thought about it for a second and then said "ok, I'll give it a try".  Carli had not thought of it before but now she had a challenge in front of her and was determined to conquer it.

On the day of the ride I got to the six mile rest stop where all of us 12 milers were to turn around to complete the out and back route.

 

 

 I asked around to see how Carli was doing and found out that she got a flat within the first mile and may have turned back after her flat got fixed.  So I headed back - a little disappointed, until I saw Carli chugging along in the opposite direction on  the trail - she would not let a flat tire get in the way of her goal.  She struggled through the heat in the longest ride of her life and crossed the finishline with tears in her eyes - amazed at what she had accomplished.  We shared some tears of understanding and then chowed down to a ridiculous spread from Outback Steakhouse, Carrabba's Italian Grill, and Bonefish Grill as we all celebrated a truly triumphant day.

 

Kyle

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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