Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...


FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox

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!


Patient Perspective: Michael's Experience Participating in a Clinical Trial

MichaelGehr1On January 19, 2016, I was diagnosed with FA. My family and I decided to take an educated approach, and we did just that. Within a few weeks, we had read countless websites about the symptoms and what we could expect with my new diagnosis. Soon, we began learning about the science behind FA, and we eventually found ourselves reading about clinical trials. By April, I was signed up for one; my first visit was to be on the 15th.

Even though it had been less than 3 months since my diagnosis, I knew that a clinical trial was something I wanted to involve myself in. It was something that just made sense for me. Added bonus: The drug company, Reata, was able to pay for plane tickets, meals, etc.! I knew that as well as being helpful for the community and everyone looking for a cure for FA, I may be able to benefit also. For example, one of the tests I did was a stress test, where progression is measured by viewing one’s exercise capacity via a recumbent bicycle. Largely because of this test, my family purchased an exercise bike which I use daily. As another example, since I am in highschool, I knew that this trip would be a learning experience for me. I was able to learn a lot about restrictions and necessary testing for a clinical trial. Every doctor was able to teach me about their specific test, and the lead doctor, Dr. Hoyle, taught me about basic neurologic tests, and even some about myself. 

Add a comment
Read more: Patient Perspective: Michael's Experience Participating in a Clinical Trial

A Mom's Perspective on Participating in Clinical Research

Six months ago, our 10-year-old son Jake was diagnosed with Friedreich’s Ataxia. When his neurologist explained FA, she told us that FA has no treatment and no cure. The diagnosis is staggering. Learning that there is no treatment and no cure (yet!) took our breath away.

JakeJuip10After taking a few months to cope privately with the diagnosis, we were ready to talk about it publicly. By that time, we had combed the internet and had read everything we could find about FA. We are a family always on the go. We just couldn’t sit idly by and watch the disease progress. We needed to do something to respond to Jake’s diagnosis. Consequently, we were so grateful to learn about and attend the Patient Symposium in Philadelphia last October. At the symposium, we learned about biomarker studies and clinical trials. (Biomarker studies have no direct benefit for the participants, but the studies gather specific information about FA patients that can be used in future clinical trials. Clinical trials explore whether or not a specific therapy is safe and effective for humans.) Each study and trial has specific qualification criteria, so I compiled a list of the studies and trials that Jake was eligible for, and I called Jen Farmer, Executive Director of FARA. She’s so knowledgeable and helpful. She spent time explaining each of them and their objectives. Importantly, she also outlined the time commitment for each. Because FA is a progressive disease, most of the studies and trials require repeat visits to track the disease’s progression over time. All of the studies and trials would require travel, so we needed to balance our desire to contribute to FA research versus the practical constraints of school schedules, childcare for our other children while we travel, and cost. 

Add a comment
Read more: A Mom's Perspective on Participating in Clinical Research

Patient Perspective: Jake's Experience Participating in Clinical Research Studies

JakeJuip9Hi! My name is Jake and I want to tell you about being in a clinical trial. But first, let me introduce myself. I'm 10-years-old and in 5th grade. I live in Grosse Pointe, Michigan. I was diagnosed with Friedreich's Ataxia in August 2016 because I was stumbling around a lot. Doctors looked at me more, and we found out that I have FA.

People might think biomarker studies and clinical trials are scary and embarrassing, but it's actually just you and a team of awesome doctors. I've been in four biomarker studies and one clinical trial, and I can tell you firsthand that they're not scary. They are exciting and full of hope and show you that they're getting closer to a cure. 

Add a comment
Read more: Patient Perspective: Jake's Experience Participating in Clinical Research Studies

2017 Move Your Way for Rare Disease Day

MYW2017 blog

Rare Disease Day aims to raise awareness around the world of rare diseases and their impact on patients' lives. To join these efforts, let's tell the world about FA! Here's an updated take on the Move Your Way for Rare Disease Day Campaign...

We're asking the FA community to submit a short (30 second) video clip showing how you move your way living with Friedreich's Ataxia

Add a comment
Read more: 2017 Move Your Way for Rare Disease Day

FA Hangouts - January 2017

jan17hangouts smallThe FARA Ambassador Program presents an FA Hangout talking about: FA and sleep. Does having FA impact your sleep? If so, how do you manage? Have you had a sleep study? Let's talk about ways we can help each other make sleeping much better!

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 for hearing or speech difficulties.

When: Hangouts will be held Tuesday January 24th, Wednesday January 25th, and Thursday January 26th (mark your calendars, FA Hangouts will be the last Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days.

How: Email to sign up or ask questions. Google (not us!) limits hangout capacity. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

Add a comment
Page 7 of 64


FacebookTwitterLinkedinShare on Google+
Event I.jpg


Archived in
  the Ambassador Blog