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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:

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!

FA Hangouts - February 2016

The FARA Ambassador Program presents an FA Hangout talking about the National Organization of Rare Disorder’s motto: “Alone we are rare together we are strong.” We’ll talk about what it is like to have a rare disease, Friedreich’s Ataxia. What do we have in common with others with rare diseases (like taking a long time to be diagnosed)? What’s different? What does Rare Disease Day mean to you?

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday, February 24 and Thursday, February 25 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9 PM EST both days. More times will be added if needed. Email to sign up or ask questions. 

Patient Perspective: Liam's Experience Participating in a Research Study

PatientPerspectiveLiam1What does progression mean? What does it mean to have a degenerative disorder? I thought it meant that with every day, things would get a little harder for me to do. Every day I would type a little slower. Every day I would be a little worse at the pegboard test.

But that’s not what it feels like to have Friedreich’s ataxia. We have good days and bad days. I know that if I am sleepy, hungry, or tired, I will have a harder time with my symptoms. and the opposite is true. If I get a good night’s sleep and have a solid breakfast, I am a pegboard test master. 

Keith OBrien

KeithOBrien1Name: Keith OBrien

Age: 17

Where do you call home? Tom's River, NJ

Education: I'll graduate TR High School East in 2016

What’s a typical day for you? A typical day for me is waking up, going to school, coming home, and practicing guitar until I go to sleep. Sometimes I'll watch TV or a Movie, I don't listen to music a lot because I'm usually too busy practicing.

How long have you known you are living with FA? I've known about my FA since around 4th grade.

Are there any others with FA in your family? My older brother has FA, we're the only two.

Describe an adaptation you have had to make due to living with FA. I've not yet had to use a mobility device, but I have had to make changes in my life. For example, balancing while showering has become difficult, so we've installed a few handles in the shower. Beyond that I try not to make accommodations, I like to push myself to be as free from assistance as I can possibly be. 

Patient Perspective: Mary's Experience Participating in a Research Study

MaryNadonScott2Hi, my name is Mary. I am 34 and live in central Vermont with my husband and two young children, joined in the summers by my two step-children. I was diagnosed with FA 13 ½ years ago, though I have only been an active part of our FA community for a little over 2 years. I think for a long time, I didn’t quite know how to accept or cope with this disease. So I didn’t.

After attending the 7th Annual Friedreich’s Ataxia Symposium, sponsored by FARA and CHOP in 2014, I became alive in a way that I hadn’t felt before. Through meeting FAmily, networking, and being immersed in our community, I felt for the first time in 12 years that I belonged. After that symposium I had the amazing experience of being involved in my first clinical drug trial: Reata’s RTA-408 phase 2 group 1. The whole experience was amazing and life changing.

After this last year’s 8th Annual Symposium (I also had the opportunity to attend the rideATAXIA Philly for the first time!), I truly felt like I was on a mission to be an active part in our community and FAmily. The first time that I heard about the FA study at The University of Rochester entitled “In-Vivo Confocal Imaging of Meissner’s Corpuscles as a Biomarker in Friedreich’s Ataxia” through an email from FARA, I was “all in”. I read the brief description, and called the study coordinator Janet, right away. I was so excited to be involved in research again, taking another step closer to finding a cure! 

Carlos Orozco

CarlosOrozco1Name: Carlos Orozco

Age: 21

Where do you call home? Fayetteville, NC

Education: I’ve only obtained a high school Diploma. I do plan on attending college, and major in Liberal Arts. As for my career, it still remains a mystery.

Who do you live with? I live with my Dad

How long have you known you are living with FA? When and how were you diagnosed? Since I was 12 years old, I’d noticed subtle deficiencies in my balance/coordination, but nothing severe. when I began high school is when FA started to become visually noticeable. Abnormal gait, coordination, and speech became a concern. In November of 2009, I began to see a Neurologist at the “University of North Carolina (Chapel Hill)”. On January 10th, 2010; I was diagnosed with FA.  

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