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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!


Robert Manuka

Robert Manuka Name: Robert Manuka

Age: 35

Where do you call home? I live in a sea city called Durres, Albania

Education: I have finished High school

Who do you live with? I live with my wife and my daughter

What's a typical day for you? I like to read books

How long have you known you are living with FA? I was diagnosed with Friedreich Ataxia in 2002 after I took the genetic tests.

Are there any others with FA in your family? Yes, my two brothers also have Friedreich Ataxia

Describe an adaptation and/or transition you have had to take due to living with FA. When I was first diagnosed, I used crutches, then a walker. Now, I use a wheelchair.

Dirk Desserault

Elizabeth BowenHi everyone! My name is Dirk Desserault and I am currently 35 years old.

I have always tried to live my life seeing the glass as half full. Even being diagnosed with Friedreich's ataxia at age 14 I simply viewed it as a hurdle, not a death sentence. Growing up in a fairly rural area meant that any exposure to other ataxians was a very rare occurrence. So my well-intentioned mom took to the internet trying to find someone that I could relate to, and help me understand my new life. To our amazement she found someone not much older than I was who only lived 20 minutes away.

Vincent Groot

Vincent Groot at his deskName: Vincent Groot

Age: 43

Where do you call home? Woerden, Utrecht, The Netherlands

Education: I have a Bachelor’s Degree in Human Resource Management. Unfortunately I have never worked in the field because of FA.

Who do you live with? I am single and have no children.

What's a typical day for you? I am still pretty active. I wake up around 6/7 am. I do some stretch exercises (especially legs), then dress. I have breakfast and coffee. Then I’m off to work. I am a graphic designer (career change after FA). I start at 9 am until 2:30 pm. After some coffee I go home to cook and relax.

Dragana Obadić

Dragana 1 Name: Dragana Obadić

Age: 32

Where do you call home? I grew up in a small town called Glina, and after college I moved to Čakovec, Croatia.

Education (degree(s): I graduated from the Faculty of Management in Tourism and Hospitality with a master of economics degree.

Who do you live with? I live with my husband.

What's a typical day for you? I worked at the hotel reception. Currently I am on sick leave because I was researching what was wrong with me because of my walking difficulty. Right now I'm more dedicated to myself - I do exercises every day and occasional walks, but my husband is always with me. At the end of the day, I like to watch sitcoms or good movies with my husband. We have two dogs that we take care of.

FA Woodstock 2022 - The Farewell Tour

Large Group Image By: Dillon Loomis-Head

11 people sitting around a table outdoors For the past 11 years, The Hook Family; Tom & Paula Hook, who have two daughters with Friedreich’s Ataxia (FA), have dedicated, hosted and committed to creating the event that many know as FA Woodstock. This event has meant so much for many of people. I am honored to be writing this last blog post/article about this event; due to its significance to me personally.

In 2013, I was diagnosed. At first, I tried to ignore everything going on with me, but that was not very easy to do. FA Woodstock 2018 was my first experience of going to an FA event that was not connected to Philly Weekend; The FA Symposium & rideATAXIA, I’ll be honest, I was nervous and far from home; 669 miles to be exact, I was also in a very dark place both emotionally and mentally. The moment my mom and I pulled into the Flying H Ranch, there was a shift in energies and it made me feel welcomed.

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