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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!


 

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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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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August FA Teen Hangout

August 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.

The theme will be: Talking to your friends about your ataxia. Have you done it? What were your good experiences? Bad experiences? Just want to learn from other teens how you might do it?

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Patient Perspective: Jean Walsh's Decision to Participate in TAK-831

TAK studyI like to participate in clinical trials. Sometimes it seems like a small thing to do, but I know it is a big thing. FA is a rare disease. Because there are so few of us (about 5,000 in the US and 15,000 worldwide), those of us with FA who are eligible for clinical trials need to step up and populate them. As we do, the researchers and the companies behind them can help us reach a time when no one has to hear: "FA, no cure, no treatment, plan for a short life." If we don't become research subjects, a cure will never be found.

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Read more: Patient Perspective: Jean Walsh's Decision to Participate in TAK-831
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