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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!


F.A.T. Run

FATrun1On September 26th, the first ever F.A.T. 5k in honor of Pat Schrader, was held at SUNY Oswego. It was a beautiful sunny day with more people than we ever expected. Family, friends and friends of friends all joined together. It was truly overwhelming. Chrissy Mason, a trainer at Stability Fitness, pushed Pat through the entire race. It was priceless watching the expression on his face as they crossed the finish line.

After the race we gathered at The Shed for food, karaoke and a Chinese auction. Pat visited with friends and relatives he hadn't seen in quite a while. Watching his 81 year old grandma sing and dance brought us all to tears with laughter. It was an exceptional day. 

FA Hangouts October 2015

The FARA Ambassador Program presents a FA Hangout with the theme of: Fundraisers: Hosting, Going to, and Thinking about Hosting or Attending. You don’t have to have hosted or gone to a fundraiser to attend…this hangout is for everyone (even if you think fundraisers aren’t for you) fundraisers are simply the theme.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun!

This month’s hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday October 28 and Thursday October 29 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9 PM EST both days. More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone. 

Erin Kiernan

ErinKiernan1Name: Erin Kiernan

Age: 26

Where do you call home? I live west of Baltimore, Maryland.

Education (degree(s): Received my BA in Political Science at Edinboro University of Pennsylvania in May of 2012 and am still actively seeking employment.

What is your relationship status? Do you have children? Who do you live with? I am in a loving relationship with a wonderful, TAB (temporarily able-bodied) man. We really want children, especially me, but we are waiting a few years for the time to be right, financially. Our home is within my parents’ basement apartment due to finances right now.

What's a typical day for you? I am currently unemployed, but I am actively seeking job opportunities as well as trying to get interviews done. As for now, I have an aide come to assist me twice a day Monday through Friday with various activities of daily living. We perform professional work as well as having fun in the community.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed for 19 years. Technically, I was one of the first people in the state of Maryland to be diagnosed with Friedreich’s Ataxia with the blood test. On October 7th, 1996 by Kennedy Krieger hospital in Baltimore, Maryland. I am still seen by the neurologist, who helped me through the year or so of testing, at Johns Hopkins.

8th Annual McDonnell Music Festival

2015McDonnelMusic1When traveling to the 8th annual McDonnell Benefit concert it took me through beautiful upstate NY. It turns out that Queensberry is on the shores of Lake George, at the base of the Adirondack Mountains. In a few weeks the leaves will be changing from green to brown and orange, and it will be one of the north east's biggest autumn attractions.

The event took place under a pavilion, at an Elk's Lodge. The first thing I noticed was the abundance of homemade baked goods. I am a sucker for an apple cider doughnut. I then noticed the baskets that were up for auction. The ladies who made these baskets starts designing and thinking of next year's baskets a year in advance. After making my way through the gauntlet of baskets, my attention was drawn towards the stage. With a full P.A. system, and some amazing looking equipment this was ripe and ready for some rocking. 

2015 USF Health Scientific Symposium and FARA Energy Ball

2015SEB1Every year, part of the FAmily migrates down to Tampa, Florida for the FARA Symposium and Energy Ball. 2015 was no different! We had a record number of pre-registrations (300+) for the symposium and a great turn out.

The symposium kicked off with a warm welcome to the University of South Florida (USF) by Dr. Clifton Gooch, director of USF Neuroscience Collaborative, Neurology, College of Medicine, and USF President, Judy Genshaft. They updated everyone on how dedicated the university is to finding a cure for FA (we love you, USF! Go Bulls!).

FARA Executive Director, Jen Farmer, and FARA President, Ron Bartek, gave an update on all things FARA. They spoke about the progress in FA research worldwide. Very exciting! They reiterated the value of the organization’s 2,600-member patient registry in bringing together all its stakeholders, encouraging the FA community to get involved in completing the registry. 

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