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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!


 

Naomi Houghton

NaomiName Naomi Houghton

Age 24

Where do you call home? British Columbia, Canada

Education: I have a diploma in Occupational Therapist Assistant & Physiotherapist Assistant, FA will ultimately render me unable to perform my job as a rehabilitation assistant, but for now it has allowed me to build better rapport with my clients. I can now relate to their struggles and offer encouragement to them from a genuinely understanding place.

What is your relationship status? I live with my two best friends and greatest supports: Michael, my common-law partner, and Memphis, my Teacup Yorkie.

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FA Hangout September 2018

FA musicThe FARA Ambassador Program presents an FA Hangout talking about: Live Music! Noelle and Brittany are leading the discussion. How's venue accessibility? How's your hearing? Let's talk! September 25 & 26!

At 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 for hearing or speech difficulties. (Mark your calendars, FAHangouts will be the last consecutive Tuesday and Wednesday of the month, except for holidays and the like) at 8-9:30 PM EDT each of the three days.

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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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