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FARAFARA Cure FA

FARA Ambassador Program

The 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.

Kailey Newcity

NewcityMy name is Kailey Newcity, I'm 27 & I live in Lake Charles, Louisiana. I was diagnosed with FA in 2015 after originally being (mis)diagnosed with Charcot Marie Tooth Disease, as many symptoms do overlap. My diagnosis story is a long one, I went through about two years of testing at Baylor Neurology in Houston, Texas. Everything from EMG's, MRI's, extensive blood work, a spinal tap, & even a nerve biopsy. Now that I have a definite diagnosis through a genetic panel blood test I can find my place in this amazing community, learn & help spread awareness & eventually, like all of us, hope to find a cure.

Read more: Kailey Newcity

Olivia Ramazio

Olivia RamazioMy name is Olivia Ramazio, I am currently 18 years old and I live in Florida.

Ever since I could remember, I was very athletic and had a lot of energy. All of my favorite activities and hobbies began to get harder, starting at about age 6. I started feeling extremely out of breath, my feet kept crossing in front of each other and my balance started to become unstable.

Read more: Olivia Ramazio

Camila Primavesi

CamilaHello, my name is Camila and I'm from Brazil. I was diagnosed around my 20th birthday. Living with FA is not easy, but before my diagnosis, it was more difficult. I only read about FA six year later when I could not hide anymore to everybody (I thought that I was hiding it, lol) even for me (I was lying to myself).

Read more: Camila Primavesi

Carli Hook Hanson

CarliCarli (Hook) Hanson, 36, from Michigan City, Indiana.

After watching my sister find her diagnosis from across the country, I saw symptoms in myself at 22 (occasional loss of balance). I graduated from Texas A&M at Galveston with a BS in Marine Administration. I am happily divorced with two kids. My parents are close by and help a lot with the kids. I worked for a small concrete construction company for 10 years before "retiring" to disability.

Read more: Carli Hook Hanson

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.

Read more: Natache Iamaya
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