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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:

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!

2015 Seaside Stride Luncheon

What is more plentiful than the grains of sand on the Jersey coast? Mightier than the crashing waves of the vast Atlantic Ocean?  Hope and determination – shared by many NJ families committed to finding a CURE for FA. New Jersey Seaside Stride is an annual fundraiser for FARA,  each May, in Seaside Park, NJ. Families from all over the northeast gather for breakfast snacks, a stroll along the shore on the famous boardwalk, a delicious lunch hosted by Carrabba’s Italian Grill, a basket auction and games of chance.

6th Annual Race for Matt and Grace Kick-off

The little state of Rhode Island experienced the large influence of the FA community on June 2nd. Not only was it Matt DiIorio’s 34th Birthday, but it was the official Kick-Off Bash for the annual Race for Matt & Grace. Coming into its 6th year, the 5K race in the fall honors native FA’ers Matt DiIorio and Grace Hopkins, serving as an opportunity to increase awareness and raise funds for FARA-backed research.

25th Annual Doubles Charity Tennis Tournament

The Annual Memorial Day Charity Doubles Tournament is a highlight of the Tampa Bay tennis community’s year.  It is one of 5 tournaments directed by the Suncoast Tennis Foundation.  Now in the 25th year of the tournament, the Friedreich’s Ataxia Research Alliance was chosen in the very competitive selection process.  240 participants played in 14 different divisions of men’s, women’s, and mixed doubles hosted at the East Lake Country Club in Oldsmar, FL May 22nd through 25th.  The festivities were kicked off by a Friday night draw party with a silent auction and drawings throughout the holiday weekend all to raise money and have a great time!!!   Approximately $20,000 was raised for FARA, which will be used directly to fund research for a cure!

A Look Behind the Scenes

As a part of being a FARA Ambassador on the Leadership Team I was invited to the bi-annual FARA Board of Directors and Scientific Advisory Board Meeting this past weekend. It was an intense two days of meetings with a tight agenda covering a variety of topics relating to FARA. The FARA staff does an incredible job of coordinating everything from slides, presenters, agenda, to breakfast, lunch and fun local dinners.

FA Hangouts 6

The FARA Ambassador Program presents the sixth FA hangouts with the theme of Careers and FA.
We have had several rounds of successful FA hangouts. We laughed, we connected, we hung out, we learned from and about each was so fun! 
This month’s hangout is open to anyone with FA and a translator if needed. Tell us how your career is going, your struggles and your successes, and/or get career tips from people who are making it happen. Hangouts will be held Wednesday June 24 and Thursday June 25 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9PM EST both days.
More times will be added if needed. Email Mary at to sign up. 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.
An email will go out 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room a half hour early, but the topic conversations will begin at the top of the hour.
See you soon!
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