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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!


 

Natache Iamaya

NatacheMy name is Natache Iamaya, I'm Brazilian and live in Rio de Janeiro. At the age of 13, I began to notice something in my coordination and balance and at age 18, after several inconclusive tests, I was diagnosed with Friedreich's Ataxia.

When the first symptoms became visible, I noticed people staring of me out of curiosity. Later in college, I continued to feel prejudice and I had to face a country unprepared to accept handicapped people. These events added to all the dreams and expectations of a young woman eager to discover things and find acceptance, bewildered me and made me isolate myself in a cocoon of sadness, fear, and shame for what was happening. It took me a while but I turned around and I realized that my happiness depends primarily on me and how important it is to have determination and courage to keep moving forward.

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Andrew Marshall

Andrew Marshall 4Name: Andrew Marshall

Age: 37

Where do you call home? Johannesburg, South Africa.

What is your relationship status? I am not married.

What's a typical day for you? My days vary. Typically, I focus on a gym routine or marketing my memoir.

How long have you known you are living with FA? I was 16 when I was finally diagnosed after going to numerous professors and doctors.

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7th Annual Mother's Day 5K Race for Christina

Race for ChristinaThe 7th Annual Mother's Day 5K Race for Christina was on Sunday, May 12th. This was my family's third year going. It has become a fun and special tradition. This year my husband was unable to go, so my Uncle Jack volunteered to drive my boys (Elijah 9, Gabriel 6 ½) and me from Vermont to Pennsylvania. We had a fun weekend vacation in Bucks County, PA. The weather Friday and Saturday was beautiful; upper 70-degree temperatures and sunny skies with a lovely breeze. We had fun at our hotel and exploring some of the local areas.

On Sunday, we woke up to a cold and rainy day. We had been watching the weather and knew this was in the forecast, but I think we were all hoping the weather would change. As the saying goes in show business, "the show must go on!" So, our little family piled into our van and drove in the rain to the race. Despite the weather, we were so very excited for this day! To see our FAmily and raise funds and awareness for Friedreich's Ataxia research.

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Cure FA Soirée: React with Music 2019

Cure FA Soiree CollageThank you, Gehr family of Edmond, OK, for organizing an exceptional FARA fundraising event! Cure FA Soirée: React With Music was held Saturday, May 18, 2019, also FA Awareness Day at the Edmond Hilton Gardens Inn. Kyle Bryant shared a few words on how we react to FA and how the Gehrs proactively reacted to their son, Michael's diagnosis several years ago. Michael Gehr, himself, spoke about his diagnosis and FA. Researcher, Layne Rodden, from the OU College of Medicine/University of Oklahoma also shared a few words about her experience and discoveries on the cellular level of FA research.

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Madelyn Frederick

MadelynHey, everyone, I'm Madelyn Frederick and I am 20 years old.

When I was 13, I hit the genetic Jackpot and was diagnosed with a progressive, degenerative, neuromuscular disease called Friedreich's Ataxia. Say that three times fast! It has taken me a while to accept and embrace my life now, 5 years to be exact. I was in denial. I thought if I did not hear, talk, or think about FA it would disappear. Unfortunately, that was not the case and as my progression became more noticeable I knew I could not hide anymore.

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