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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!


Said Benchrif

Said BenchrifName: Said Benchrif

Age: 30 years old

Where do you call home? Sale City. Morocco

Education (degree(s): I have finished secondary education with an emphasis in sciences humaine (social sciences).

Editor’s Note: Secondary Ed. In Morocco - There are three years of lower-middle school. This type of education is provided through what is referred to as the Collège. After 9 years of basic education, students begin upper secondary school and take a one-year common core curriculum, which is either in arts or science. First year students take arts and or science, mathematics or original education. Second year students take earth and life sciences, physics, agricultural science, technical studies or are in A or B mathematics track. https://en.wikipedia.org/wiki/Education_in_Morocco

August Teen Hangout 2020

Teen Hangout 8-29-2020 Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

Join our Thursday night hangout this month in a discussion lead by FARA ambassadors Breaunnna Hoffman and Madelyn Fredrick about going back to school with ataxia during Covid 19. Are you getting ready to go back in person, online, or in some combination? Do you agree with your family's decision about going back to school? Are you worried? Are you excited?

Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation…the theme gets us going, but we definitely don't stick to it! It isn't counselling.

When: Thursday, August 27th, 8-9 PM ET
(The hangout opens 15 minutes early to try to work out technical issues. Please remember we are volunteers not IT professionals! Come early if you've never attended a hangout on Zoom before.)
 
Who: Teens with ataxia ages 13 to 19 (Please note: all the teens will be together)
 
Where:    On Zoom so if you have access to the internet, speakers, and a camera on your device, you can come!
 
How: If you are under 18, you need to get your parents or guardian to download and sign this consent form. Once signed, this should be emailed to jeantw62@gmail.com.  Parents/guardians can also ask questions at this email address. If you already have a signed consent form, no need to get a new one! The signed form is good until the signer revokes it. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom.

18 and over: just let us know that you want to come by emailing us at farateenhangouts@gmail.com or jeantw62@gmail.com A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom.

Been before? If you already have permission or you're 18+, Jean Walsh will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don't get one, email Jean at jeantw62@gmail.com.
 
Pop an email to either address if you have questions!

 

Sam Archuleta

Sam ArchuletaName: Sam Archuleta

Age: 16

Where do you call home? Indiana

Education: Jr. in High school

Who do you live with? I live with my loving step mom Steph, step brother Toby, Dad Tracy, Brother Alex, Mom Lisa, and my sister Mikaela. My nephew Raymond lives with my sister.

What's a typical day for you? A typical day for me is I wake up, take a shower, eat, then go ride my bike for 3.5 miles around my neighborhood. After that, I watch sport highlights or watch rewinds of baseball, football, or basketball games. I go hang out with my friends Collin,Luke, Mason , and Ethan. We always find something fun to do like place bets on pool, I will go watch them play sand volleyball, go to sonic, or go swim. Usually at night I play PS4 with my friends if I’m not already with them.

How long have you known you are living with FA? I was diagnosed with FA March of 2018 when I was 14 years old. I was going to appointments every 3-4 weeks for about 2 months until they diagnosed me with FA.

Libby Schwers

Libby 5Name: Libby Schwers

Age: 23

Where do you call home? Des Moines, IA

Education degree(s): I have a bachelor's degree in Graphic Design from the University of Northern Iowa.

What's a typical day for you? I work as a graphic designer at a design agency called TwoTone Creative. After work, I like to cook myself dinner, and I'm always trying out new recipes. I like to relax most nights and spend time with friends on the weekends.

How long have you known you are living with FA? I was diagnosed with FA in May of 2019, but I have been dealing with symptoms of FA for about six years.

Márcia Ferreira Galvão

Marcia 3Name: Márcia Ferreira Galvão

Age: 59

Where do you call home? Poços de Caldas, Estado de Minas Gerais State, in the southeast part of Brazil

Education degree: I graduated in 1982 and have a degree in Brazilian Language and Literature.

Who do you live with? I am divorced with two children - 32 and 27 years old - and live with my ex-husband, who is very helpful.

What's a typical day for you? I read a lot, don't watch conventional TV (only movies and series I download on my computer. My routine includes personal hygiene in the morning, as I need help with everything. In the afternoon I use the computer to follow the news, entertainment and bank services or whatever else is needed.

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