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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!


 

The Ataxian in Athens

Private Screenings of The Ataxian 
Athens, Georgia | May 2016

Ataxian Atlanta1

It was a FARA-packed weekend, with the Emory University FA patient symposium the day before and the first rideATAXIA Atlanta hours earlier. It surely felt like every effort was leading up to this. I drove an hour and a half east of Atlanta to Athens, Georgia with my husband and a friend who also has FA. I grabbed a Kleenex from the car and shoved it into my purse, just in case. 

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Emory University FA Patient Symposium 2016

EmorySymp2016 room

For being the first time to have a symposium in Atlanta, I want to preface what got me here and why I am so excited for FA patients.

I grew up in Atlanta and currently live 10 minutes from Emory University. I had never heard of Friedreich’s ataxia (minus the very little I had come across on Google just prior) until my diagnosis 10 years ago by an Emory University neurologist, known to specialize in ataxia, Dr. Chip Wilmot. There are over 100 known types of ataxia. FA is the most common hereditary form, affecting an estimated 1 in 50,000 in the US. Emory University (and Dr. Wilmot as the principal investigator) is one of a dozen sites in the worldwide Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA), actively a part of clinical research and trials to advance treatments and care in FA. A huge thanks to FARA funding the CCRN in FA, this disease is incredibly understood. I am data-obsessed and I do my homework! Research is proving FA is solvable, cure-able. But because it is not widely known, it is underfunded. 

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FARA FEST 2016

2016FARAFEST1The fourth annual FARA FEST Lei Day 5k was a huge success, despite everything going on the weekend of May 7th. That weekend had us worried about getting supporters out to our event because it was Mother’s Day, there were 5k races for two other charities going on locally the same weekend and there was a big annual fundraising event for Seton House that is also sponsored by one of our corporate sponsors. Who would have guessed it would be our biggest year yet??? When all was said and done the total funds raised almost doubled from just over $30,000 in 2015 to over $56,000 in 2016!!! Our FAmily is now $56,000 closer to a cure!

FARA FEST continues to grow in participation every year and expansion talks are underway. This event is truly amazing and I thank everybody who is involved for their support. There has been quite a lot of work and dedication to make this event what it is today.  Add a comment

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Carla Poletti

CarlaPoletti1Name: Carla Poletti

Age: I am 48 years young!

Where do you call home? I live in Paragould, Arkansas. This is in the northeast corner of Arkansas and about 70 miles west of Memphis, Tennessee. I was born and raised in Arkansas. The house that I live in is fully accessible and I am able to do pretty much anything. Even the kitchen counters, stove and sink are lowered so I am able to cook safely.

Education (degree(s): I graduated high school way back in 1986. I just can't hardly believe it has been 30 years! After that I went to a VoTech school where I earned a diploma in Data processing.

During my high school years I had plans of going to college and hopefully becoming something "successful." When I received my diagnosis the beginning of my senior year, I was scared, and really didn't know how much time I had left, so I chose vo-tech school. Looking back now, I know that I could have done college, but I really do feel like my life has been "successful." I have had many wonderful opportunities that have come my way regardless, and even because of my disability. I have had great jobs, served in my community, been active in my church and Ministry, been actively involved with MDA, have a happy marriage, am a daughter, sister, aunt, and have lots of great friends. I am generally healthy and very happy. No regrets! I am blessed indeed! 

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Laura Bishop

LauraBishop1Name: Laura Bishop

Age: 23 years old

Where do you call home? Bournemouth, England

Education (degree(s): I have a diploma in child psychology and I also have a blog website involving FA.

What is your relationship status? Who do you live with? I'm in a relationship. I live with my mum.

How long have you known you are living with FA? (When and how were you diagnosed?): I was diagnosed at age 15, my diagnoses went on since I was 13 because the specialists believed my walking etc was due to scoliosis.

Are there any others with FA in your family? No. My family and I had never even heard of it before. 

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