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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: 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!


Alena and Alisa Wolfson

Name: Alena Wolfson
 
Age: 18 years old
 
Where do you call home? I live in Glendale AZ
 
Are there any others with FA in your family? My younger sister, Alisa. (read Alisa's interview below)
 
Describe your transition from walking to walker/wheelchair. It was very sudden. I got sick with a respiratory virus, then when I got better I wasn’t able to walk anymore. 

Erin Pieper

Name: Erin Pieper 
 
Age: 27
 
Where do you call home? St. Louis, Missouri 
 
Education (degree(s): Bachelor of Arts in Psychology and Sociology 
 
What is your relationship status? Do you have children? I'm a single Mom to the sweetest three year old boy, Eli! The best way to describe my living situation is by saying I have two homes. I live alone in a house that I stay at when Eli goes to his Dad's. It's a small slab home (no stairs) which is very easy for me to maneuver around in. When Eli is with me, we've been staying at my parents just for that little extra help I may need. Hopefully, within the next six months I can start transitioning Eli back to my house. He knows my do's and don'ts; what I can and can't do and helps me out without me even having to ask! 

Summer FUNdraising in RI

Summer in Rhode Island means sunny beach days, sailing across the bay, and indulging in fresh seafood. For the local FA community, summer also brings a sampling of great fundraisers to bring everyone together and support FARA-funded research efforts. 

The Big Study in the Big Apple

As a Friedreich’s Ataxia (FA) patient, I want to do whatever I can to contribute to finding a cure for this disease. Not only for myself and my future, but for the lovely FA community that I’ve been blessed to get to know since my diagnosis. To do my part, I signed up for the patient registry through the Friedreich’s Ataxia Research Alliance (FARA). Here, I find out about all research studies and clinical trials the moment news is available straight from the study coordinators!
 
When I heard that there was a study in NYC, I was immediately interested because, let’s be honest, who doesn’t look for an excuse to go to the city?? The Department of Genetic Medicine at Weill Cornell Medical College is researching cardiomyopathy in FA patients. They are looking to compare and evaluate different tests in assessing the cardiac dysfunction that can occur with FA.
 
Fortunately, I don’t suffer from cardiac symptoms (yet) but since I have a confirmed diagnosis of FA, I was eligible for the trial.

Conal Alexander

Name: Conal Alexander
 
Age: 35
 
Where do you call home? Christchurch, New Zealand
 
Education (degree(s): I have studied computer aided design at the local polytechnic and have two diplomas. I do not work.
 
What is your relationship status? Do you have children? Who do you live with? I am single with no children. I live with my brother (also with FA).
 
What's a typical day for you? My support worker arrives early and  I have breakfast in bed, then I rise and have a shower. My support worker leaves and then I take the dog for a run (I have a handcycle), then usually have a coffee with my parents. Then I have dinner while watching TV. I spend the evenings playing computer games until late.

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