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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!

Pfizer and FARA: Rare Disease Community Outreach

On September 9, 2014, FARA was invited to visit Pfizer as part of their Rare Disease Community Outreach Program. I was lucky enough to be asked to participate on FARA’s behalf and share my personal stories about Friedreich’s Ataxia (FA) and the impact the disease has had on both my life and my family. Pfizer is one of the largest pharmaceutical companies in the world; they have committed to drug discovery in FA and they and we are hopeful that those discoveries will be part of the treatments that will someday lead to a cure!

Spotlight on Patrick Cogan

Born and raised in Lynn, Massachusetts, Patrick Cogan is a very accomplished 30 year old man, who is also very independent and very driven. He studied Marketing at Salem State College. He works as a clerk and would seem to be your average guy, except he is not. Everyone has a story, and he let me play "reporter" for this month's spotlight. He is a busy man - when he is not working, he is training for and competing in triathlons and traveling to schools throughout MA - to speak to children and young adults. He is about pushing yourself further and overcoming adversity, all while giving back.

USF Scientific Symposium and FARA Energy Ball 2014

The 6th annual FARA/USF Health Scientific Symposium took place at the USF Health Center for Advanced Medical Learning and Simulation (CAMLS) in Tampa, FL on Thursday, September 4, 2014. Researchers, clinicians, patients and families gathered together to hear upcoming research, possible treatments and patients’ inspiring stories of living with Friedreich’s Ataxia. This year’s focus was “what a difference a year makes” and all these three components were touched upon.

The FARA Energy Ball is an event held to benefit funds and research for FARA and USF Ataxia Research Center. $1.8 million was raised for research on Saturday, September 6th! Please read below for personal experiences shared by those living with FA...

Ashley Dodson

Name: Ashley Dodson

Age: 30

Where do you call home? Alabama

Occupation/Employment: I'm a wife and I clean my house, that is my job. :)

How long have you been living (or known you are living) with Friedreich's Ataxia? I was around 8 when I was diagnosed. My teacher noticed my writing was shaky and I couldn't keep up during a spelling test, and when my sister would cut my bangs and I'd shut my eyes, I would loose my balance.

Do you have any known family history of similar symptoms to FA? No (not that I know of).

11th Annual Fuzzy Buzzy Golf Tournament

Sunday, September 7, 2014 was the 11th Annual Fuzzy Buzzy Golf Tournament. I am amazed every year at the length this tournament has been going. When the Fuzzy Buzzy started, there were not many other FARA fundraisers, but looking at the calendar these days, it’s a packed schedule. Once again, this year, was a great success. We raised $20,000 for FARA and even more awareness! This brings the 11 year total to $125,000, furthering research to find a cure for FA.

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