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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!


Freda Butler-Bohn

FredaHi, my name is Freda Butler-Bohn. I'm 52, and I'm from Pauline SC and live in Arden, NC.

I have Friedreich's Ataxia. I was diagnosed around age 32 when I was going to have my 3rd child. I have three children now, two boys and one girl. Aged 20, 23, and 30 years old plus I have two grandkids. For pets, I have three cats and a bird. I went to college and am a Registered Nurse. I worked up till 2012 when I first became an RN I wanted to be a Missionary midwife, but I can't do that so I may go back to get BSN so I can work somewhere as a nurse sitting down.

Julia Mancebo López

JuliaName: Julia Mancebo López

Age: 51

Where do you call home? I live in Madrid (Spain).

Education degree(s): I graduated in pharmacy. For me, it's really important to have had this education, but i haven't worked in this field.

Who do you live with? I live with my husband and my son that is 22 years old.

Valbona Ferati

Valbona 2Name: Valbona Ferati

Age: 34 years old

Where do you call home? Kosovo

Education degree(s): High school, three years English language course.

Who do you live with? My parents, my brother, and my sister. I have two other sisters who don't live here.

What's a typical day for you? I wake up at 11 o'clock, I ride my recumbent bike and have coffee. I am wheelchair-bound, so my mother gets me out for a ride in the city. When I don't go out, I read books, especially romance. When it's evening time, I watch the news on TV, then any TV programs shows. Netflix is my best friend each night from 10 pm till 1:00am. Oh, I forgot to mention the telephone and internet.

Frances Clair

FrancesName Frances Clair

Age 29

Where do you call home? Chicago, IL

Who do you live with? My parents, one sister, our dog, and my cat.

What's a typical day for you? When we aren't experiencing a global pandemic, I wake up in the morning and work on fictional writing and then go to work on weekdays. I work at an after school program for elementary school children, and I am one of the adults in charge of the program at that school. I've worked there for eight years.

How long have you known you are living with FA? I was diagnosed in February 2007. About a year earlier, my pediatrician was alarmed by my lack of balance. She sent us on a hunt that ended in a blood test to diagnose FA a month before I turned 16.

May Teen Hangout 2020

May Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

May's hangout theme will be: Show us Your True Colors with your Zoom background and/or your custom facemask.

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