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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!


 

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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Read more: Remembering FARA Director Nick Johnson

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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Spotlight on Natache Iamaya

FARA’s main asset in the journey toward treatments and a cure is the FA community.  The community is needed to participate in the FA longitudinal study to collect data on the progression of the disease, provide blood samples for studies, participate in clinical drug trials, provide their perspective in media stories, labs, and pharma companies, and to continue pushing the effort toward the ultimate goal.

The global FA community continues to grow with partners in Canada, Europe, the middle east, and Australia. The sun literally never sets on FA research and awareness.

Brazil has joined the global FA community with multiple efforts. Dr Marcondes Franca, Jr. at University of Campinas in Sao Paulo Brazil is a neurologist who provides clinical care and is committed to research. He  has been doing natural history exams, neuro and cardiac MRI research, hearing testsand is working with FARA to establish a Collaborative Clinical Research Network (CCRN) site in Brazil.  All of this activity has peaked the interest of the Brazilian FA community and they are getting organized for the effort.

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Research Spotlight: Dr. Marek Napierala

A Lab Devoted to Friedreich’s Ataxia Research

The University of Alabama at Birmingham Stem Cell Institute in the School of Medicine

How incredible would it be to play a part in the cure for FA— in changing lives?

Thursday, February 12, 2015 was a pivotal day in my journey living with FA. I have now seen with my own eyes the process of measuring GAA triplet repeat expansion and determining frataxin protein levels, a liquid nitrogen freezer of FA patient skin cells programmed to become induced pluripotent stem cells, incubators of derived cardiac cells (cardiomyocytes), and those same cardiac cells beating under a microscope (only a few labs in the world have these). These cardiac (and neuronal) cell models are very useful in testing new potential therapies for FA and discovering potential disease biomarkers.

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Pull for a Cure

 

 

 

 

 

 

 

 

This year's Valentine's Day had a little extra BANG in it for some of us!!!  Many couples, along with friends came out and spent this special day at the Tampa Bay Sporting Clays to help raise funds and awareness for FARA.

It began with a wonderful welcome committee at registration, passing out the scorecards and shells.  Everyone then made their way over to the raffle/auction area to check out all the wonderful trips, guns and memorabilia.  Those guns get quite the attention at the raffle!  There were also some unforgettable experiences such as Greece, Costa Rica, Fishing Tour and even a private Helicopter Ride.  You know it's a FARA event when these types of items are part of the auction!

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Read more: Pull for a Cure
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