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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!


 

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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Read more: Research Spotlight: Dr. Marek Napierala

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

FA Hangouts 4.0

Have FA? Like or want to travel? Join our fourth FA hangout to talk about travel experiences you've had or want to have.

FA Hangouts are just a bunch of people with FA talking to each other using Google Hangouts. Not a lecture just people with FA sharing on a specific topic.

Dates and times: Thursday and Friday, March 26 and 27 at 7 and 9 PM EST as long as there are people who want to hang out. 
Read more: FA Hangouts 4.0

Donovan Simpson

Name: Donovan Simpson

Age: 18

Where do you call home? Yonkers, New York 

What grade are you in? What is your dream job? I’m a senior in high school and my dream job is to work in game design.

Who do you live with? My Mom and Dad.

What's a typical day for you? I go to school and I come home :) 

How long have you known you are living with FA? I started showing symptoms when I was like 5 and was diagnosed at six. 

Are there any others with FA in your family? No, just me. 

Describe an adaptation and/or transition you have had to take due to living with FA. When I was about 10, I  broke my right arm. Ever since then, I have been in a wheelchair.  

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Read more: Donovan Simpson

FA Hangouts

Come join us for FA hangouts! Once a month the Ambassador Program hosts a series of online hangouts for people with FA to talk to each other for an hour and a half. We pick a topic that will be relevant to people in the FA community. Topics include things like exercise and fitness, setting and pursuing your goals, or clinical trial participation. Sometimes we invite guests from the community to share their experiences and personal expertise.

We like to keep a relaxed and friendly atmosphere in the hangouts. We have plenty of regulars, and there are always new faces, as well. You can come in with lots to say or just sit back and listen to other people's stories. FA is rare, but the hangouts are a great opportunity to connect with people you wouldn't otherwise get a chance to meet. We get people from all over the United States and even around the world who can all relate to each other's experiences. We laugh, we connect, we hang out, we learn from and about each other...it's a lot of fun!

See what other people have to say about hangouts about hangouts!

Hangouts usually happen at (new time)  8PM - 9:30PM Eastern on the last Wednesday and Thursday of each month (just one longer hangout per night). Check the Ambassador Program blog for each month's topic or see our schedule of upcoming hangouts. To sign up, send an email to fahangouts@gmail.com with the times you can attend. You will get an email with an invitation link to join the hangout. Hangouts are hosted on Google+ (get a free account at plus.google.com) and should work with any webcam and every major web browser.

 

 

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