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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!


 

Drake and Trisha

Name: Drake (aka bub)

Age: 8 years old

Where do you call home? Ohio

Do you have any brothers or sisters? I have a sister named Zoe.

What grade are you in? I am in the second grade.

What do you like to do in your free time? Play outside, play DS and play Xbox.

How long have you been living (or known you are living) w/fa? (When and how were you diagnosed?) I was six when I found out. They gave me a blood test that hurt.

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5th Annual Swing Away at FA

Wiffle Ball Tournament & Family Fun Day Benefitting FARA Saturday, October 18, 2014 In honor of Hannah and Austin Stacks

“These past five years have been an incredible success. We are ready for another successful five years. But truthfully, I hope we are out of business by then because we have cured FA!” -Jason Stacks (Dad to Hannah & Austin)

Swing Away is held at Cabin Fever Farm, the home of Mike & Sue Thomas, generous supporters each year, in Dawsonville, Georgia, about an hour north of Atlanta. The beautiful autumn weather brought together 8 tournament teams. This year’s event had approximately 250 people in attendance and has raised $42,000 and counting with the event and the letter writing campaign combined -- reaching $185,000 total since Swing Away began in 2010!

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Voyager Therapeutics Ribbon Cutting Ceremony

On October 21st I had the opportunity to go to a ribbon cutting ceremony for Voyager Therapeutics. Voyager is working on gene therapy for Friedreich’s Ataxia and a couple of other diseases of the central nervous system. I was joined at this event by my dad and another FA family. The event itself was fun: speeches and ribbon cutting followed by a tour of their place and yummy food. The Voyager staff treated us like family and kept telling us we were family. I believe them! Now they are FAmily.

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Brittany Wiseman

Name: Brittany Wiseman

Age: 25

Where do you call home? St. Louis, Missouri

Occupation/Employment: I work for Farmers Insurance. My manager's mother has MS, so she is familiar with the hardships disabilities can cause. She is incredibly understanding of FA and for that, I am beyond thankful.

Education: I originally went to school to become a vet tech. As my FA progressed, I realized the physical demands of this career were challenging. I changed my major to social sciences. Ultimately, I landed in the insurance field, became licensed, and chose this as my career.

How long have you been living (or known you are living) with Friedreich's Ataxia? I've been living with FA for 10 years. I was diagnosed at the age of 15 when I was doing routine testing prior to having scoliosis surgery. I was being tested for Neurofibromatosis (a disease my brother has) I had a horrifying experience. I was told "good news is you don't have Neurofibromatosis, bad news is you have Friedreich's Ataxia."

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Rocky Mountain Bird & Birdie

FARA was selected as the recipient charity for the Bird & Birdie Clay Shoot and Golf Tournament this year in Denver, Colorado on September 26. The tournament is an annual event where the participants spend the morning shooting at Colorado Clays Shooting Range, eating steak for lunch and then off to the Buffalo Run Golf Club for 18 holes of Golf. Altogether, the event netted over $35,000 for FARA.

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