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FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


Union Jack's British Pub Party

UnionJackThe recent fundraiser at Union Jack’s British Pub was a great night! Of course, because of FA I could barely hear anything due to all the people there, but hey! that’s why we had this fundraiser… to cure FA and correct this hearing problem! Randy Sisulak is the organizer of all this and has been holding various fundraising events for FARA for the last several years. He is friends with Karen and Pat Keirnan, and their daughter Erin who has FA.  Aside from the Claxton Classic Golf Tournament, (which I also attended in July, and had a blast!), he has hosted events at various local restaurants to serve as meeting spots to gather FA friends and families, as well as his own circle of supporters who are devoted to funding research for FA. These events serve as a great way for local FA families to meet one another and reconnect. So huge props to Randy for a great fun night! 

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Jakob Mitterhauser

JakobM 3Name: Jakob Mitterhauser

Age: 24

Where do you call home? Vienna, Austria

Education (degree(s)? How will FA add to your future [career]? Bachelor of Science in Geography (2015) ; Starting my individual Master Urban Climatology and Urban Climate in October 2017. FA will not change my future career because I believe there will be a cure in 3-5 years and my progression is mild.

What is your relationship status? I am happy single. I live in my own flat in Vienna alone.

What's a typical day for you? Every day starts with meditation and balance exercises in the morning. This semester I am working on Monday/Thursday while going to University on Tuesday and Wednesday. Friday till Sunday is free and mostly used for fun with family and friends and time in nature. During the week I have physical therapy and mental training once and swimming twice.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed in Vienna in August 2011 after looking for a diagnosis for 6 months. I was 18. So, I have known it for 6 years. 

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The Ataxian Screening - Lee's Summit, MO

Ataxian MO 1A feeling anyone with Friedreich’s Ataxia, or a family member of someone diagnosed, knows too well, is isolation--the feeling of not knowing what to do next, where to turn for help or support. Dawn and Eric Graczyk have two of six children, Marissa (12) and Josiah (6), who were recently diagnosed with FA. Determined to make a difference, the Graczyk family has been gathering information and helping to spread awareness since the diagnosis of their children.

Prior to the screening, the family was able to show Kyle Bryant around during his visit. This meant sampling some famous K.C. barbeque, farm life and a tour of Whiteman Air Force Base, just to name a few.

On September 21, 2017, the Graczyk’s hosted a screening of “The Ataxian” at B&B Theatres in Lee’s Summit. In one place, in the middle of the country, people gathered to raise funds, learn and be encouraged and inspired by the film. Whether they had seen the film or not, everyone was there to learn more and show support to those with Friedreich’s Ataxia. Before the showing, Dawn expressed her appreciation for the support and explained how much hope the film had given her and her family. 

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10th Annual McDonnell Music Festival

10McDonnellMusicOn the same weekend in September for the last ten years the McDonnell family has hosted a benefit concert/raffle to benefit FARA. For the past 9 years it has been held at the same venue in a small town in upstate NY called Queensbury. Now the McDonnell's son Dylan,38, has FA, but this event draws out the entire town. Not only to support Dylan, but to cut a rug with their favorite cover band The Marcabes. Not only does this band feature Dylan's uncle on guitar, but his father Dave on lead vocals. They have been playing together since High School, and playing well. Now it's quite a sight to see a dance floor full of 50-80 year old locals dance and twist the night away. This was my 3rd year in a row attending this event and everyone made me feel so welcome. From a cinematographer from PEP (the patient experience project) letting me fly his DJI drone, to the band My Time inviting me on stage to sit in on guitar. I am looking forward to next year’s event already. 

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Slim's Journey

SlimsJourney 2017 1

Saturday, September 23rd, 2017, ’Slim’s Journey FARA 5k run/2.5k walk’ was held in Warrenton, MO at The College United Methodist Church for its 6th annual benefit for FARA (Friedreich’s Ataxia Research Alliance). This was my second consecutive year participating in this journey and as last year, it was a memorable experience. My Team ‘Gotta Have FAith’ grew by 11 people from last year to this and I hope each year this event is held, my team will keep expanding. 

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