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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is 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.

FARA Ambassador Program Mission Statement:

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.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

2016 Fuzzy Buzzy Golf Tournament

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Once again, my favorite day of the year, the Annual Fuzzy Buzzy Golf Tournament. This year was extra special because my Uncle Paul, aka Buzzy, has been running this tournament for 30 years! The tournament began in 1986 with a few guys having some fun and playing golf. As the years passed Paul wanted to put some meaning behind the tournament. He decided to make the Fuzzy Buzzy a charity event to raise money for the Friedreich's Ataxia Research Alliance. The first year about 50 players raised $2,400 for FARA. This year, the 13th year, we had 130 golfers and raised $18,000!! 

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FA Indy Family Fun Walk/Run

FAIndyWe had an amazing turnout for our first annual Family Fun Walk/Run. We were able to meet other families who are traveling through the FA journey with us. A special thank you goes to all of those who helped get this event off the ground and to those who volunteered their time to make everything run smoothly.

We had a bit of a challenge as our original course was flooded from a heavy rain the day before. But two of our volunteers regrouped and came up with another course. The day of the event was perfect. 

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Read more: FA Indy Family Fun Walk/Run

2016 Claxton Classic Golf Tournament

2016ClaxtonClassicGolfTournamentMy buddy and co-founder, Bill Sabia, and I have been pretty much the ground crew on keeping the Claxton going for a lot of years. We had about 136 golfers this year with over 150 in attendance so it was a good crowd! We played this year at a beautiful private country club, The Country Club of Woodmore in Mitchellville, MD. A very nice facility and the day turned out to be sunny and warm; good golf weather!

As of now, our donation will be something like $5,000 and we still have one more event coming up on September 10th. That will be our 3rd Annual “Leinenkugel Beer Garden ‘Oktoberfest’ party for FARA.” We’re hoping for a great turnout! 

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FA Hangouts - August 2016

The FARA Ambassador Program presents an FA Hangouts and the topic is your summer highlight. What was your favorite part of the summer? Have a favorite summer tradition, go on a great vacation or attend a fun outdoor event?. Tell us about it!

hangoutsteam smallAt FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday, August 24th and Thursday, August 25th, 8-9:30 PM EST. New this month Tuesday, August 23rd was added due to popular demand. Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity. FA Hangouts do fill up. It is first come, first served. So the earlier you sign up, the more likely you are to get the date and time you want. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone.

Hope to see you there!

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FA Woodstock 2016

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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. 

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