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FARAFARA Cure FA

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!


 

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.

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Read more: Clint Stewart

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. 

Read more: Cure Us Portland

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.

Read more: Rare Disease Day 2015

Remembering FARA Director Nick Johnson

Nicholas A. Johnson

October 19, 1963 - February 20, 2015

“St. Nick”

Nick Johnson was a fine man who lived his life well. He fought his fight—our fight—so graciously that I and other FARA colleagues referred to him as “St. Nick.”

A gifted and accomplished athlete in his younger years, Nick was number one on his tennis team and shortstop on the baseball team. He and I often joked that any bad years suffered by the Boston Red Sox between 1985 and 2000 resulted directly from FA having deprived the team of an all-star infielder in the form of Nick Johnson.

I came to know Nick when he told me he wanted to help FARA in its efforts to advance treatments for FA. In very short order, we asked him to join FARA's Board of Directors, and he began immediately applying his special gifts, talents and relationships to accomplishing our mission. He was instrumental in bringing the Muscular Dystrophy Association (MDA) and FARA together in common cause, playing a key role in the initial meetings of the leadership of the two organizations and in building the relationship into the tremendously effective partnership it has become. More recently, Nick and his wife Sue played the pivotal role in bringing Voyager Therapeutics together with FARA and the FA community, resulting in Voyager's commitment to develop a gene therapy program for FA that is so powerfully promising of providing a therapy for our disease.

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Joe Tyler

Name: Joe Tyler

Age: 33

Where do you call home? Cincinnati, Ohio

Education: BS Finance from Saint Louis University

What is your relationship status? I’m engaged to Karen Ried.

What's a typical day for you? I am an Area Sales Manager for Hogan Truck Leasing. We assist companies with truck leasing needs, alternative financing, maintenance management, etc. My job requires me to regularly visit customer locations, tour our Cincinnati facility, etc.

How long have you known you are living with FA? Diagnosed in 2012, been showing balance issues since 2002.

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Read more: Joe Tyler
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