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FARAFARA Cure FA

FA Woodstock 2016

2016FAWoodstock1

Another amazing year in the books! FA Woodstock was once again the highlight of the summer for many people with Friedreich's Ataxia. Two days full of laughs, new friends, tie-dying, swimming, and so many new memories; this event was incredible :)

The beginning of this event was all about getting comfortable in a new setting and meeting the many other guests. There were many unfamiliar faces, which I thought was terrific; so many young families (people who have been newly diagnosed) who were able to find comfort in meeting a group of people with such similarities. The Hook's have such a great network of people out there; a seemingly endless number of people who wanted to lend a helping hand. 

2016FAWoodstock3Someone volunteered to host yoga and reflexology so that people could try something new. Others volunteered at the tie-dye station, some being friendly faces that return every year to help make such beautiful Woodstock shirts. They also had volunteers that kept all the cold drinks full and made delicious meals, even kept the ice cream machine fully stocked. They had an unbelievable firework show and a giant campfire with lots of s'mores. One of the coolest things, in my opinion, about this event is the many volunteers who help make this so enjoyable for everyone attending, including Dr. Lynch, those working with him and those working for FARA. They came to get samples of both DNA and blood from patients and carriers, offered hearing tests and were available to answer any questions you may have had. It takes a pretty remarkable doctor and his staff to take time out of their schedule and volunteer to spend two days helping patients and families!

One quote that I thought exemplified this event the best was from a young lady who is newly diagnosed: while sitting with my daughter and I, she asked Lily (3) if she had FA too? This nearly broke my heart. It was clear that Lily did not understand the question that was being asked so I answered for her and said, "nope, I am the only one." She then told us "I have FA too, but I don't want it!" What on earth do you say to that? I'm sorry you have to deal with this crappy disease? I smiled and said, "Honey, I don't think any of us do." This young lady blew me away with the wisdom and hope in her response when she said, " It's okay though because they are working REALLY hard to find a cure…and they're close!"

If this doesn't touch your heart and give you hope, then I don't know what will!! A huge thank you to the Hook family for all their hard work and dedication putting on this amazing event every summer!

JamiePlourdesignatureJamiePlourde2015

 

 

 

 

 

 

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In 2014 I saw pictures from FA Woodstock and thought to myself, "This looks like fun, but it's too far away." It turned out to be the shortest flight I have taken all year. The entire Hook family showed so much hospitality it is beyond words. Seeing the younger FA'ers and their families have a great time and not feel singled out for having FA, and seeing all of the science happening reminded me of one word. Hope.

 

 

 

JacobTompkins2015JacobTompkinssignature

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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