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FARAFARA Cure FA

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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!


 

Teen Hangouts - September 2018

September Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. We are now hosting them on WebEx. If you had a hard time joining our Google Hangout, you aren't alone. We hope you'll try again on WebEx.

If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

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Colton Watson and Family

Colton 3Name: Colton Watson

Age:10

Where do you call home? Littleton, Colorado

Education: 5th Grade

Who do you live with? I live with my parents, two older brothers, and dog Jaxon.

What's a typical day for you? I get ready for school, do my physical therapy exercises and stretches, go to school, come home and do homework, and then play video games or watch YouTube.

How long have you known you are living with FA? I went to the doctor in May and was officially diagnosed with a positive genetic test in July. I showed signs of balance issues for a couple years prior to that.

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16th Annual Fuzzy Buzzy Golf Tournament

Fuzzy BuzzyOnce again, my favorite day of the year, the 16th Annual Fuzzy Buzzy Golf Tournament. The tournament began in 1986 by Uncle Buzzy with a few guys having some fun and playing golf. As the years passed, Buzzy wanted to put some meaning behind the tournament. He decided to make the Fuzzy Buzzy an annual 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 course was completely full with 148 golfers and for the first time I had to turn away foursomes, and we raised $21,000.

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Kyle Waterman

Kyle WatermanName: Kyle Waterman

Age: 20

Where do you call home? Cedar Rapids, Iowa

Education: I attend the University of Northern Iowa. I plan to major in Statistics and to minor in Finance. My ultimate goal is to do statistics for sports. FA has made it impossible to play sports, so I want to be involved in any way.

What is your relationship status? Do you have children? Single with no kids.

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Read more: Kyle Waterman

Beads for Hope Fundraiser

Beads for Hope

At the beginning of the year, FARA published a summary of grassroots fundraising throughout 2017; event names, funds raised, and location of the event held. I noticed that Vermont was not on this map. As an Ambassador, I knew that I was pretty active in creating and raising awareness, attending fundraising events, and being active in the FA community, but seeing this map really brought to my attention that I was not providing/creating a way to allow my local community the opportunity to be a part of the journey to a cure. I decided right then, that this year I was going to put Vermont on the map for FARA's grassroots fundraising!

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