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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!


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. 

Billie Wells

BillieWells1Name: Billie Wells (JoJo)

Age: 26

Where do you call home? Farmington, Michigan

Education: I would like to be a physiologist, FA has humbled my life and opened my mind and made me less judgmental.

What's a typical day for you? A typical day for me is school or doctors appointments, physical therapy. Riding my Catrike has become a major part of my life.

How long have you known you are living with FA? I was diagnosed at age twelve. 

12th Annual Fuzzy Buzzy Golf Tournament

2015FuzzyBuzzy1Another successful year, raising $16K! For the last 12 years every second Sunday in September is the Fuzzy Buzzy Golf Tournament. I am always overwhelmed and amazed by all the support and generosity I experience. This year started in the typical fashion (aside from the rain); me being nervous and excited, and my aunts running around setting up raffles and getting ready for 12 noon registration. As golfers arrive so did some of my local friends who are also dealing with FA. We greeted the 130 players, wished them luck, reminded them why they were golfing, and saw them off for their day of golf. 

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