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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!


 

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.
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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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A Whole Lotta Love for FA Hangouts

We think the FA Google Hangouts that the ambassador program sponsors/puts on are awesome. This project was the original idea of former member of the ambassador program, John Cernosek. Thank you John for beginning such a meaningful project. So, in a very unscientific way we asked people to write about the hangouts in general or the last hangout on careers. Below is the product of that and the consensus is that the hangouts are as awesome as we think they are. Natalie and Rachel are participants in the hangouts while Jacob and Robbi are members of the ambassador program and the team that puts on the hangouts specifically. We all have FA.
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Research Spotlight: Bidichandani Lab

On July 9, FARA Ambassadors Christin Haun, Emily Penn, and Andrea Kiess and their families visited the Bidichandani Lab at the University of Oklahoma College of Medicine. They are doing some amazing research on Friedreich's Ataxia!
 
Dr. Sanjay Bidichandani, and the researchers at the Bidichandani lab shared time, and information with us. Dr. B. has 20+ years’ experience in a FA research lab setting.  He assisted on the Massimo Pandolfo team, who discovered the FA gene in 1996. He has since contributed to the study of the molecular pathogenesis of the disease, focusing on GAA triplet-repeat sequence in order to decipher the precise molecular mechanism(s) underlying Friedreich Ataxia. The thing that caught my ear was that the Bidichandani lab has been able to raise frataxin levels on a cellular level. 
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Sean Mazeres

Hi, my name is Sean Mazeres. I am 23 years old and I was diagnosed with Freidriech’s Ataxia in 2009. I was 16 years old when I found out the devastating results. To hear, at that age, that this disease was pretty much a death sentence, was extremely hard to process and get through. With the support of my family and some of my friends I was able to get by. The low times were very low but the high times have been amazing and such a blessing. I definitely have had my fair share of bad days, also though, my good days.
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