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FARAFARA Cure FA

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: 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!


 

A Night to Fight FA Round 2

Burrow Hill PhotoOn April 7, 2018, The Burrows Hill Foundation held 'A Night to Fight FA Round 2' auction fundraiser. After our event last year was such a success, we knew we had to have it again. And for the second year in a row, it was fantastic. We are so happy that our auctions have been able to raise money for research and awareness.

We held the event in the Akerson Tower at the Navy-Marine Corps Memorial Stadium, while a Navy lacrosse game was being played outside. Our silent auction included over 60 items and our live auction included trips to Jackson Hole, St. Barths, Sanibel Island, Montana and tickets to The Late Show with Stephen Colbert. In addition, we had two beautiful wooden stand-up paddleboards, that were handmade for our event. We are so grateful that Kyle Bryant was able to speak at our event and talk about everything that he has accomplished. The event raised about $145,000 and we are so incredibly grateful for this and for everyone that attended!

SamHill CommunityContributor

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David Willis

DavidWillis1Name: David Willis

Age: 41

Where do you call home? Manchester, Connecticut

Education (degree(s): Bachelor of Science – Occupational Safety and Health; Associate of Science – Treatment/Prevention of Alcohol and Chemical Dependency.

What is your relationship status? Do you have children? Single/Divorced with an 8-year-old son. Currently live alone in a single-story ranch.

What's a typical day for you? Since college graduation in 1999, I have worked for United HealthCare in many different capacities. In October 2017 my employer had mass layoffs which I was a part of. My typical day has changed drastically over the past 6 months. I currently spend my days trying to gain employment!

How long have you known you are living with FA? I have late on-set FA. I was in my late twenties when I began having balance problems and in my early thirties when speech difficulties began. It took countless doctors and about five years to get a confirmed diagnosis of FA. I was officially diagnosed in 2010.

Are there any others with FA in your family? None.

Describe your transition from walking to walker/wheelchair. In the beginning I tried hard to fight it. I would rely on walls, furniture, or whatever I could grab onto to stay upright. I shortly there after began using a cane (which didn’t help much but would reduce the speculation of onlookers regarding my sobriety). I currently have a few rollators in my house and use a Travelscoot (light weight scooter) if I leave the house. 

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More Than Pizza

2018FlatbreadI feel each day we hear of yet another breakthrough. We are coming closer and closer to the cure. Although I am not eligible for many “active drug” trials, I still want to contribute. As I wait, I do all I can to help FARA keep going by fundraising and raising awareness.

Everyone needs to eat dinner so why not have pizza and beer, while listening to live music and supporting a good cause on a random Tuesday night. For the past six years, that’s what I do.

On Tuesday night, April 24, 2018, I had a "Flatbread fundraiser for FARA". Flatbread restaurant, which serves organic brickoven pizza, has a weekly charity night. A portion from the sale of pizza goes to FARA. A keg of beer was donated by a friend and the entire sale also goes to FARA. Joe Parrillo started off the night with some acoustics. My uncle Neil Porter and his band, Grand Theft Audio, closed the night playing some great tunes and my aunt belted out a few songs. I was rolling around from table to table checking out everyone’s pizza! 

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Elizabeth Bowen

ElizabethBowen1Name: Elizabeth Bowen

Age: 34

Where do you call home? Hilton Head Island, South Carolina, born and raised.

Education: I have attended some college. I used to think it was very important to obtain a degree. But now I feel like as long as I can continue to learn new things, I’m good. I very much hope to write a book sometime in the future.

Who do you live with? I am divorced and have two children. I live with my parents and two out of three of my younger brothers. I am currently in a deeply committed relationship with my cat.

What's a typical day for you? I don’t exactly have typical days. Sometimes I have appointments, head to the gym, maybe I’m doing volunteer work, or maybe I’m spending time with my mom, painting and watching TV.

How long have you known you are living with FA? When I was 12 years old, I went to get a physical from the doctor in order to play basketball for my school and he diagnosed me with scoliosis. I began seeing an orthopedist to treat my curved spine and he believed that I might be suffering from another condition, ordering a DNA test. When I was 14 years old, I was diagnosed with FA. 

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Cure FA Soirée: React with Music

CureFA Soiree 1The super amazing and fun ‘Cure FA Soirée: React with Music’ was a benefit for FARA featuring musical performances of friends & local talents Renee Anderson, Whiskey and Pie, and Jamie Bramble; plus updates from Michael Gehr, Kyle Bryant, Dr. Angel Martin & Dr. Sanjay Bidichandani (who was part of the team that discovered the FA gene in ‘96).  It was held on April 14th, 2018 in Edmond, Oklahoma, and it was put together by Michael Gehr and his parents: Eric & Liz. I had the pleasure of being a part of this event with the special invite from the Gehr family. I drove over to Edmond from St. Louis with relatives of the Gehr’s. We arrived Friday the 13th, and had non- stop fun until we left Sunday the 15th. I enjoyed dinner and a downtown exploration with the Gehr’s Friday, met new faces before and during the event on Saturday and concluded with an intimate brunch with some participants of the Soirée on Sunday.

The theme of the Soirée was ‘React with Music’, which comes from the tagline of The Ataxian documentary, “Life is About how We React.”  Michael and his family are all singers, and all have a great love of music. In school, Michael has always enjoyed singing, and he has participated in choir, musicals & talent shows since 3rd grade. Many of his closest friends are involved in Heritage Hall Performing Arts. (Heritage Hall is a college prep school Michael has attended since preschool.) “It was wonderful to hear performances of many of Michael’s friends from school, and a high point of the evening was Michael’s mostly solo performance of the song ‘Creep’, with backup from the school choir.” - Liz Gehr 

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