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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!


Patient Perspective: Abby & Chase's Experience in a Research Study

I recently had the opportunity to participate in a cardiac study at CHOP. The study consisted of blood draws, an MRI, and an appointment with Dr. Lin who is an attending cardiologist that works in the Friedreich’s Ataxia Program.

 YinglingFamilyMy youngest brother (who is 12) has FA and he participated as well. Thus, my mom, dad, brother, and I hopped in the car and made the hour-and-a-half drive from Harrisburg to CHOP. We left at about 6 AM and made our way into the hospital at 8. We met with Felice Wilson and were directed to first get blood drawn. Since it was so early I hadn’t had much to eat so my veins were not cooperating with the phlebotomist. Eventually, after being a human pin cushion, she finally collected the necessary amount of blood. 

Meg Larson

MegLarson1Name: Meg Larson

Age: 21

Where do you call home? Washington D.C metro area

Education: Senior at George Mason University, studying Communication with a concentration in Public Relations and a minor is Psychology. 

How long have you known you are living with FA? (When and how were you diagnosed?) I was misdiagnosed with Charcot-Marie-Tooth (CMT) When I was 14. I never questioned the diagnosis, regardless that many of the supposed symptoms did not apply to me. At 16 I went to John's Hopkins University Hospital to meet with Dr. Thomas Crawford, a specialist in CMT. Within 5 minutes, he correctly diagnosed me with Friedreich's. 

Accelerating Drug Development and Clinical Trials

The below article is Part Two of a series that began in the Winter 2015/2016 edition of the FARA Advocate.

"Drug Development Series: Accelerating Drug Development and Clinical Trials"

By Jane Larkindale, PhD


If there is a common complaint that we hear from patients, it is that the drug development process is so slow. This is not surprising – the process is very deliberate and takes a lot of time. This is so that we can be sure that treatments work and are not too dangerous, or more precisely, that the benefits of the treatment outweighs any risk of taking that treatment.

We have heard patients comment that their disease is so bad that they will accept some risk, but that the FDA insists that they ensure the efficacy and safety of a drug before patients can try it. This is, to some extent true, although the FDA does recognize (and is increasingly trying to understand) how patients view the balance of risk vs. benefit of a new treatment. It has several programs aimed at trying to get urgently needed medications to patients as fast as possible, without letting completely ineffective and/or dangerous drugs go on the market. It should be noted that many drugs fail in trials either because they are proven to cause no benefit to patients (not a good outcome), or worse, that the effects are worse than not taking the medication (e.g. a study of minocycline in ALS made patients worse). That is why trials are necessary. 

Don Royer

DonRoyer1Name: Don Royer

Age: 36

Where do you call home? Cape Cod, MA

Education (degree(s): B.S. Occupational Safety Studies. I worked in Field Safety for a construction company for about 12 years. Within the past year I have changed career paths to get me out of the construction world. I now have a job as a Human Resource Information Systems Manager. It’s a long title but, basically I work at a computer all day.

What is your relationship status? Do you have children? I am married and have 2 little girls (ages 5 and 1). 

FA Hangouts - January 2016

The FARA Ambassador Program presents an FA Hangout talking about everyone’s favorite New Year’s resolution: fitness. Tell us how you stay fit with FA, learn how others stay fit! This is sure to be a great way to learn from one another.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme.

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

Hangouts will be held Wednesday January 27 and Thursday January 28 (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 fahangouts@gmail.com to sign up or ask questions. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone. 

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