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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!


 

Louisiana Screenings of 'The Ataxian'

All around, as far as you can see is flat - green fields and trees dot the distant horizon in all directions. The humidity hugs us all inescapably in its uncomfortable, hot, sticky, unwelcome embrace, like that one aunt at Thanksgiving. Kyle Bryant champions the theater screen as somewhere nearby an alligator sniffs the air and dives back into the brown waters of a bayou. The Ataxian has indeed been screened for the first time in Louisiana.

There were two showings in the state of Mardi Gras parades and boiled crawfish.

Rachel Walker describes the screening in North Louisiana:

The Ataxian opened to a full house at Ruston's Celebrity Theater on Saturday, October 19. We were fortunate to raise over $4,500 and increase awareness with a large audience.

Our efforts to publicize the documentary were given a huge boost by Mayor Ronny Walker (no relation to the Walker family!). Upon learning about FA and the film, Mayor Walker invited us to participate in his weekly radio program. Rick Godley, on-air personality of The Peach 99.3, became another instant member of the FAmily, as he made 2 additional radio broadcasts available to our family. Kyle Bryant also participated in a broadcast on the morning of the screening. 

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FA Hangouts - August 2017

Aug17 hangoutsThe FARA Ambassador Program presents an FA Hangout talking about: FA and adventure. Alison Bouchard will lead this hangout talking about our adventures, intentional or not! Was it riding a zip line, climbing a mountain, or riding a city bus? Tell us about your adventure.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday August 29th, Wednesday August 30th, and Thursday August 31st (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM ET all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

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Jacob Ferguson

JacobFergusonMy name is Jacob Ferguson. I am 22 years old and live in Montgomery, Texas with my family, including my 17 year old brother who also has FA. I am working on a business degree at LoneStar College and Sam Houston State University. I love to work out and work with a trainer at our local gym a few days a week.

I am always up for adventure. We just returned from a trip to Mexico. We had a blast! We were able to scuba dive in the resort dive pool, parasail over the ocean, and deep sea fishing all for the first time!

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Matt Lafleur

MattLafleurName: Matthew Lafleur

Age: 31

Where do you call home? Opelousas, Louisiana

Education (degree[s]): BA in English, MA in general mental health counseling

What's a typical day for you? I live next-door to my family’s company where I work with family nearby, so I live on my own and am able to go to work next door on weekdays. Most days, I write for the blog I contribute to about being a (bad) Catholic dealing with FA. The blog is called Sick Pilgrim. Less often, I like to volunteer as a counselor in my area.

How long have you known you are living with FA? About 20 years.

Are there any others with FA in your family? My younger sister also has FA. She is 29. She and her husband have two incredible kids, and they live next door.

Describe your transition from walking to walker/wheelchair. My symptoms became apparent when I was in junior high/high school, so at a time when I most wanted to just fit in with everyone else, my clumsy walk and poor coordination made me stick out. I refused to accept the help from a wheelchair in high school, mostly because I was hardheaded. In college, I realized that there were no walls I could hold onto for support when I had to cross campus to get to class, so I finally agreed to use a wheelchair. And what really surprised me was that being in a wheelchair, instead of imprisoning me, gave me a small and newfound sense of freedom - no longer was I the one everyone had to wait for; no longer was I consistently putting all my strength into remaining upright. I would have scoffed at this idea, but found it to be absolutely true - that sometimes accepting help can make us more independent, not less. 

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FA Hangouts - July 2017

FAhangouts july17The FARA Ambassador Program presents an FA Hangout talking about: FA and hobbies and recreation. Nick Andresen will lead this hangout talking about what we do for fun. Tell us what you do and learn about what you want to do next… movies to sky diving, tell us all about it!

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday July 25th, Wednesday July 26th, and Thursday July 27th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM ET all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour. 

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Read more: FA Hangouts - July 2017
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