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FARAFARA Cure FA

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: 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!


 

9th Annual Anytime Fitness Charity Golf Scramble

2017AnytimeFitnessThe 9th Annual Anytime Fitness Charity Golf Scramble was March 11th 2017. Anytime Fitness was kind enough to invite FARA back again as one of the charities for the event. This event also benefits the Suncoast Animal League and a local friend battling Stage 4 cancer.

It was certainly a beautiful day for golf, about 76 degrees and not a cloud in the sky! We had 126 golfers in attendance and raised over $10,000. We began the day with Pickles Plus providing us a box sandwich lunch, which was delish! Once the announcements were made, National Anthem was sung, the players were on their way! 

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Read more: 9th Annual Anytime Fitness Charity Golf Scramble

2017 FARA/University of Iowa FA Patient Symposium

2017IowaSymposium 2Upon learning a FA Symposium would be just a state away we knew as a family we had to attend. Our daughter Mekayla had reached out to one of her friends that had never been to a symposium, and we were delighted Emma Joyce and her parents were able to also make it down.

The morning started out with a showing of “The Ataxian”, and it brought home so many different points. From Sean and Kyle experiencing physical struggles during the bike race and sheer exhaustion, to the passion of John and Mike (the other riders on the team) to make up time during the race. The movie showed from the bikers support crew, to the young families featured in the film, it’s a tight knit FAmily with one goal in mind. 

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Visiting FARA Funded Researchers

Katie Schultz joined the FARA team, as the Patient Engagement Director, in early February. Katie serves as a liaison between the patient community and other FARA stakeholders such as the pharmaceutical industry, academic scientists, and governing bodies to promote understanding of the FA condition and incorporation of FA families in research. Katie brings experience in investment management and biotech industry as well as training as a Genetic Counselor to the effort. Some of Katie’s FARA initiatives include upgrading the FA Global Patient Registry, working with the Ambassador Program and assisting with preparations for the upcoming Patient Focused Drug Development meeting. Katie recently had the opportunity to visit the labs of some FARA Funded Researchers and meet members of the FA community. Her blog about these visits and her learnings follows below.

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Dr. David Corey’s Lab at University of Texas, Southwestern Medical Center, Dallas – February 2017

It was exciting to meet Dr. David Corey and his colleagues and tour his lab at University of Texas Southwestern Medical Center. We were able see firsthand the research that they are doing with patient skin cells. FARA Executive Director, Jen Farmer and I gathered with Eric & Lisa Dagely and their sons Jason and Alex, Linda DeSanders and her son Spencer Wright, and David Henry and his parents Dave & Karen, to hear about Dr. Corey’s incredible work researching ways to increase frataxin and to experience life in the lab. 

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FA Patient Focused Drug Development Meeting - Your opportunity to tell the FDA what is important to you in finding a treatment for Friedreich’s Ataxia

Drug Development Meeting 4

What is a Patient Focused Drug Development Meeting?

In 2015 the Food and Drug Administration (FDA) began a new initiative to expand the way it looks at therapies, specifically seeking input from patients. The agency wanted to hear directly from the community about patients’ needs, rather than assuming that internal FDA scientists understood every disease and patient population. Thus, it launched the Patient-Focused Drug Development (PFDD) Initiative, a series of public meetings led by the FDA and designed to systematically gather input from patients regarding their experience of living with specific diseases, the preferred impact of potential treatments, and the benefit/risk analysis when considering a new targeted medication.. The FDA scheduled the initial 20 meetings, many of which have taken place and are considered very successful. In order to reduce their administrative burden however, the FDA, has now moved to a new model where such meetings are led by patients and patient groups, with the FDA attending and participating. FA has been selected to be one of the disease areas to host such a meeting in 2017.

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Read more: FA Patient Focused Drug Development Meeting - Your opportunity to tell the FDA what is important...

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

PatientPerspective Frankie1Hello! My name is Frankie Perazzola, 24 years old and diagnosed with FA at age 22. I started STEADFAST/Actimmune/ Interferon Gamma in February 2016 which later came to an unexpected stop in November of 2016. This drug was supposed to increase levels of frataxin which all FA patients lack. Since frataxin is essential for energy production, Actimmune was expected to increase the specific protein which would potentially increase energy levels and possibly increase mitochondrial function. Two simultaneous shots, every other day were required by injection in my arms and legs. The first portion of the study, I did not know if I was injecting the drug or a placebo. However, I was guaranteed the drug for the second portion and even had the option of continuing until approval by the FDA- which I later opted for. 

Another option I went for was the muscle biopsies- which is essentially a mini operation requiring a small incision on the thigh that leaves you a tad sore afterwards. No anesthesia required. I learned through my main neurologist, Dr. Perlman, that muscle biopsies were a better way to measure frataxin levels. By better, I mean a more accurate way to measure the levels compared to just giving blood and cheek swabs, because muscle is considered affected tissue. If I was participating in a trial, I wanted to give everything I could in order for my results to be as precise as possible. 

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