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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!


 

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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John Ryan

Name: John Ryan

Age: 26

Where do you call home? Coastal New Jersey

Relationship status? Single

Occupation/Employment: Unemployed at present/worked at MDA in the past

Education: Bachelor degree in Criminal Justice

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed 16 years ago at age 10. I saw a neurologist at the Children's Hospital of Philadelphia.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No.

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Slim's Journey of Hope

It was June 2011 when our family learned of Friedreich's ataxia. We were not fortunate enough to learn of the disease through an article, a blog, or an event. We learned the hard way, with a neurologist giving us the name as the diagnosis for our 16 year old son. On that day, it felt as if we hit a brick wall going 60 miles per hour. We are the parents. We are supposed to fix everything and make everything better. But the hurdle in front of us seemed impossible. If life could be compared to a boxing match, I felt like we were down for the count.

Thankfully, with the love and grace from God, He empowered us with renewed strength. We pulled ourselves together and stood back up. We were not going to give up. We were going to keep fighting anyway we could. With no treatments and no cure, we felt helpless. And that is when we realized doing nothing was not going to be an option. We wanted to find an avenue to educate others about FA while raising funds for FARA.

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Hole Out for a Cure

The Hole Out For A Cure Golf Tournament was held in Peoria, IL on September 8th. Each year we are so impressed and amazed at the local support of family, friends and area businesses in ways they contribute to make the event such a success.  This was the 7th year of Hole Out For A Cure which has raises approximately $25,000 each year. The funds are raised through event registration, silent auction items, raffle items donations and the generosity of the Peter's family matching dollar for dollar what is raised by the silent auction.

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