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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:

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!

FA Hangouts - March 2016

The FARA Ambassador Program presents an FA Hangout talking about goals. We’ll learn about each other’s goals. We’ll talk about: How important it is to have goals. Can we support each other? How/are your goals different because of FA?

This is what one of the FA Hangout participants says about Hangouts: I’m really glad I took part in the hangout, and I plan to join the next one. Everyone was really nice and welcoming, and I never felt out of place. It was pointed out that my trying to live in the past is pointless, and I should focus on what I can do now. I think I needed to hear this from someone in the same boat.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome! 

Drug Approvals and What Happens Next

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

"Drug Development Series: Drug Approvals and What Happens Next"

By Jane Larkindale, PhD

Once a drug has completed a successful Phase III trial, unfortunately the drug is not automatically on the shelves of the local drug store the next day. There are still several steps that need to be worked through before a doctor can prescribe the drug to patients.

First, the drug sponsor has to pull together all the data that they have and submit it to the FDA (or equivalent authorities outside of the US) and ask for approval of the drug. This is through a request for a “New Drug Application” (NDA) for a drug or a “Biologics License Application” (BLA) for a biological therapy (e.g. gene or protein therapy). These applications are typically about 100,000 pages long and contain all of the information about the drug from preclinical data, through the data from all of the clinical trials and also information about the process for making the drug, delivering the drug, quality control etc. It also includes information on what will be on the drug’s label - which is critical as it will determine who the drug will be approved for (e.g. all FA patients or perhaps a subset of FA patients like ones who show signs of cardiomyopathy, or those who are still ambulatory, depending on what population of patients the drug has been tested in). A company will often meet with the FDA several times while developing the NDA to make sure that it includes all of the information that the FDA needs in the application. Putting this together takes some time – for example, Santhera completed a successful Phase III study for idebenone in Duchenne Muscular Dystrophy in mid 2014. In June of this year they announced that they are in discussions with the FDA about an NDA, but the NDA has yet to be filed. 

Pull for a Cure 2016

2016PullforaCure1On February 13, FARA kicked off our fundraising efforts in Tampa with a literal BANG as supporters participated in “Pull for a Cure”, an annual clay shooting tournament held at Tampa Bay Sporting Clays and hosted by the Hunters & Liars Club.

After picking up their shells and a safety lesson, teams of four shooters each climbed into golf carts and headed back into the woods where the ten different stations were set up. At each station, machines flung clay pigeons into the air from different trajectories, angles, speeds, elevations, and distances to mimic actual hunting. While the teams with the highest scores at the end of the day did get bragging rights, the competition was all in good fun as both first-timers and seasoned hunters took to the course. 

Patient Perspective: Kyle's Reflection on the Importance of Being an Active Participant in Research

PatientPerspectiveKB1After the stressful early morning drive on the expressway through Philadelphia traffic, I arrive at the Children’s Hospital of Philadelphia (CHOP) to find all the accessible parking spots taken. I park at the far end of a row so I can have enough room to pull my wheelchair out.

I have been at the hospital a lot lately.

Blood tests, heart exams, neurological exams, and exercise tests. Not because I have been sick but because I was a participant in one of the clinical trials for a potential treatment for Friedreich’s ataxia (FA).

I live about 35 miles away from CHOP (the FA Center of Excellence), so anytime there is an opportunity to participate in a study, I am game. 

McAlister's and Freddy's Give Back

GiveBackNightsChristin“Charitea” Night at McAlister’s Deli, Broken Arrow, OK

Tuesday, January 5, 2016 was a pleasant, winter evening to enjoy soups, sandwiches, salads, or a loaded baked potato, along with McAlister’s refreshing ice tea. McAlister’s Deli is a regional favorite, and a popular eating destination in Broken Arrow, and that evening, McAlister’s gave back 10% of the evening sales. FARA received $309. I then applied that money to my rideATAXIA team

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