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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!


 

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).

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Candace Honeycutt

CandaceName: Candace Honeycutt

Age: 43

Where do you call home? Grinnell, IA

Education (degree(s): I graduated high school in 1994 and attended college for 1 year. For the past 3 years, I've taken some classes online and in person. I hope to earn a BA eventually.

What is your relationship status? I am married to my husband of 22 years. We have 2 sons, ages 20 and 18. The 18-year-old is graduating this year and preparing for college in the fall. The 20-year-old attends college about 2 hours away.

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FA Awareness Day Luau 2019

Luau collageThe FA Awareness Day Luau was a special event! The Arioto family is deeply passionate about finding a cure for FA but equally as passionate about living their lives in a manner that doesn't allow FA to hold them back! Even with the threat of rain, this community didn't let the weather keep them from packing the house all for the sake of having fun and closing the gap between yesterday and a cure for FA. Click here to watch this short video collage of the FA Awareness Day Luau 2019.

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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.

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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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