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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!


Ribar Mohamad

Sandra Johnson Name: Ribar Mohamad

Age: 30

Where do you call home? United States of America

Education/Career: I finished high school in my home country of Syria and right now I’m learning English in the USA.

Who do you live with? I live with my family in our home.

What is a typical day for you? I do physical therapy and speech therapy, studying English at college, and doing some exercises at home.

 

David (Dave) Arnold

Sandra Johnson Name: David (Dave) Arnold

Age: 36

Where do you call home? Grand Rapids, Michigan

Education/Career: Before knowing about my FA I aspired to be a Physical Therapist (PT or DPT) or a Physician Assistant (PA). The disease progressed steadily during undergrad but I was still able to attain a Bachelor’s degree in Clinical Exercise Science with a minor in Public Health. Many of my classes were tailored towards prerequisites of graduate programs in PT or PA. During that time I was also able to become certified as an Emergency Medical Technician (EMT). I worked very hard achieving good grades, and building my academic resume for grad school. Unfortunately, two hours before taking my last exam as an undergraduate student I received a phone call from my Neurologist that delivered some devastating news. “Your genetic test is consistent with a diagnoses of Friedreich’s Ataxia (FA)”, he said. I don’t even remember what else was said. I couldn’t breathe for about 30 seconds. I laid in my bed after the call and didn’t want to move. My physician had previously discussed FA with me. I researched it, knew exactly what it was, and what it did. I was just so certain that I did not have it. I was going to skip my exam as it didn’t seem to matter much. I remember thinking “why, I did all of the things I was supposed to do”? Everything I worked for and geared towards would become abilities that I would most likely lose in the near future. It would be really hard to successfully be a PT or PA when your own motor functions are being depleted. Not saying it can’t be done, but with FA progression it may be much more trouble than it’s worth (at least from my perspective). I was in rough shape. For me it was a pivotal point. Stay in bed and quit, or go take the exam and finish what I’d been working hard to attain for four years. Even though I did not want to, something drove me to go take my exam and finish my Bachelor’s degree. My education gave me a foundation for healthcare from the provider point of view and I wanted to stay in that field. I switched gears and pursued more administrative roles. After all I did end up going to graduate school and completing my Master’s in Healthcare Administration degree. Today, I have a good job and like what I do. Which is still in the field that I wanted to be in. I may seek further education one day as I do enjoy it, even though it can be very challenging at times. I am certain though that if I would’ve quit and stayed in bed that particular day, the after accomplishments would be non-existent.

Who do you live with? I live with my wife, 5 year old son and 2 year old daughter.

What is a typical day for you? I am very fortunate to still be able to live very independently. My work as well as my wife’s have been flexible to our family’s specific needs, which makes a world of difference. I get up around 6am. I work remotely from home (which I was doing before the pandemic) so it makes life much easier. I drink coffee and work via computer for about an hour and a half. Then I get my son up around 8am, get him ready, and to school by 9am. I return, continue working and do my best to be all finished by 3pm when it’s time to pick my son up from school. I try to make dinner a few times per week, and help keep up with daily chores (garbage, dishes, lawn mowing, bathing the kids, shopping, household cleaning, etc). Getting to the gym at least three times or more per week is something I always aim for. After some family time, the kid’s bedtime routine (reading books & pre-bed wrestling), I get to bed around 11pm. Then I get up and repeat it all over again.

 

FARA Teen Hangouts - June 2021

Teen Hangout 3-13-2021 Thursday, 6/24 7-8 PM ET

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. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. (If you don't have ataxia, you are not allowed to participate in the hangout.) There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

This month we will be talking about heroes. Who is your hero and why? Are they from a comic book or your best friend or anywhere in between? Do you have several heroes? We start at the topic, but just go with the flow of the discussion. So, join us even if you don’t want to talk about heroes!!

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 counseling.

When: Saturday, June 24th, 7-8 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!

FA Hangouts - June 2021

20210114_123951_0000 Who are your heroes? Are they fictional or are they real life people? What makes someone a hero? RJ and Jean want to talk about it! Join us on June 29th and 30th.

Leila Filgueiras

Sandra Johnson Name: Leila Filgueiras

Age: 42

Where do you call home? I live in Feira de Santana, Bahia, in northeast Brazil.

Education/Career: I have finished high school. I am waiting for better times, including a financially good time, to finish college.

Who do you live with? I am divorced and live with my daughter, who is my only child.

What is a typical day for you? Even though I stay home most of the time, my days are really busy. I do all the housework and tutor kids from 4 to 12 years old. I still do hydrotherapy classes but this routine had to change in some ways due to the pandemic. I can’t wait to go back to normal life.

 

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