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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!


 

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.

Read more: Slim's Journey of Hope

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.

Read more: Hole Out for a Cure

Jack's Weapons of Grass Destruction Tour

My family recently held our first golf outing fundraiser to raise money for FARA. It was Saturday September 6th in DeWitt, Michigan where my Dad grew up. We organized the event with the help of some friends and family. The idea came about when a local businessman offered to connect us with his friend at the golf course. Since it was the same course that my Grandfather helped build, we knew we had to do it. When they asked me to come up with the name, I suggested "Weapons of Grass Destruction" because I thought it was funny and sometimes golf is a little too serious!

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Read more: Jack's Weapons of Grass Destruction Tour

5th Annual Race for Matt and Grace

The 5th Annual Race for Matt & Grace took place on Saturday, September 20, 2014 in Bryant University in Smithfield, RI. This 5K Race is held in honor of Matthew DiIorio and Grace Hopkins and to benefit those affected with FA and the research alliance group, FARA. This was my third year in a row attending the event, and each year it amazes me how much love and support is given to both the DiIorio and Hopkins families.

Being newly diagnosed with Friedreich’s Ataxia only three years ago, was a tough time for me. I was still attending college at Johnson & Wales University in Providence, RI, which was five hours from home. Not having my family close to me with the new struggles and questions of living with FA, I wanted to get involved. I saw there was the 3rd Annual Race for Matt & Grace and I decided to go with my sister to connect with families and learn more about FARA. Looking back now, I am so grateful to have connected with the DiIorio Family and other families because now I have lifetime relationships with them. Attending the 5K Race of Matt & Grace is a yearly tradition my family and I will share.

Read more: 5th Annual Race for Matt and Grace
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