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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!


Mary Nadon Scott

Name: Mary Nadon Scott

Age: 33

Where do you call home? Northfield, Vermont (Central Vermont)

Education: I received my Bachelor’s Degree in Nursing (Registered Nurse) from the University of Vermont in 2004.  However, I am currently a stay at home Mom.

What is your relationship status? Do you have children? I am happily married to my wonderful husband Kevin, and I have 4 children; 2 step-children (Isaac 10 and Bella 8) and 2 born to me (Elijah 4 and Gabriel 2).

What's a typical day for you? I am a stay at home Mom, and stay busy with my 4 year old in pre-school and my 2 year old toddler.  I also try to keep a regular work out routine with riding my recumbent bike, wheelchair aerobics, and alternating seasonally between aquatic therapy and wheeling laps on the track at a local university.

How long have you known you are living with FA? Growing up I was always the clumsy girl; tripping a lot, very poor balance, ran awkwardly, etc.  So looking back now, I can see signs of FA, however at the time, I always attributed most symptoms to having scoliosis (I was diagnosed with that in 8th grade, by a school nurse).  My FA diagnosis came later, when I was in college in 2002.  I have been living with FA for 13 years.

Are there any others with FA in your family? I am the only one in my family with FA.

Masquerade Where Wishes Come True

On March 28, we rolled out the "purple" carpet for the third annual Masquerade to CureFA.  This year's theme was "Where Wishes Come True" and everyone knows what our wish is.... to find a CURE.  It was a fairy tale setting with the horse drawn carriage and Cinderella dresses.  Anna's Army & the students at Parkersburg South have been very supportive of Anna, since her diagnosis of FA in August of 2012. I always get a bit emotional when I see the support from the beautiful girls parading in their elegant gowns and bedazzled sneakers.  They know Anna can't wear heels, so neither will they.  

It was two celebrations in one as Anna celebrated her 18th birthday.  Her best present was a surprise visit from our FAmily member, Ashley Sharp Dodson. Ashley & her cousin Cara Campbell drove all night from Alabama to West Virginia for the surprise.  Since only I knew they were coming, I  arranged for Ashley to  be at the beauty shop getting her hair & make up done when Anna came in to have hers done.  Mission accomplished! The girls got beatified and Anna was surprised all at the same time. The girls had a blast and the fun filled night had not even begun.

Clint Stewart

Name: Clint Stewart

Age:31

Where do you call home? Houston, TX

Education: Bachelors' in Business/Communication from Grove City College (PA); Masters' in Business Administration from Mount Vernon Nazarene University (OH)

What is your relationship status? Who do you live with? I am very single and share an apartment with my dad and his girlfriend.

What's a typical day for you? I don't have many typical days.  I have a physical therapist visit twice a week, and volunteer at the local hospital, so it all depends on the day.

Are there any others with FA in your family? I am the only member of my family "lucky enough" to have FA.

Describe your transition from walking to walker/wheelchai: I was able to walk (shakily) through high school.  After graduation, I had my spinal fusion operation, which slowed me down a little.  Over the past 12 years, I have made the transition from occasionally standing to full-time wheelchair user.

What do you like to do to stay active and what type of exercises work for you to stay strong? To stay active I go to the gym at my apartment and lift weights sometimes, I am not a gym rat by any means, but those few exercises help my upper body strength.  My physical therapist focuses mostly on my legs and core with stretching and low-impact work.

Cure Us Portland

Night I Will Never Forget. When my friend, Michelle Huebner Krause, approached me about a year ago with her and her fiancé’s idea for a fundraiser, I have to admit I was a bit skeptical. A dinner and live auction? How would we do it? How would we gain support from the community and people who had never heard of FA? Well, with determination and hard-work, I’ve learned great things are possible. I was so proud of Michelle, Jason, and the entire Cure Us committee when I walked in to Portland, Oregon’s Crystal Ballroom on that Saturday night, March 7, 2015. I cannot put into words the beauty I saw. From the flowers and table settings to the twinkling lights, the room could not have looked more amazing. The entertainment was beyond engaging, with charming emcees, live musical performances, and heartfelt committee speeches. 

Rare Disease Day 2015

Rare Disease Day 2015 (February 28, 2015) was a busy day of advocating for many of the 1 in 10 Americans with a rare disease. Those of us with and affected by Friedreich’s Ataxia did our part. We joined FARA’S social media campaign, Move Your Way for Rare Disease Day, by taking pictures and posting them on FARA’s Facebook timeline. We spent February trying to raise awareness and letting people know, to use the National Organization for Rare Disorder’s (NORD) motto, “Alone we are rare together we are strong.” The following are snippets about the days some of us spent at our statehouse to advocate for rare disease causes that day.

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