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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!


FARA Teen Hangouts - May 2021

Teen Hangout 3-13-2021 Saturday, 5/8 1-2 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 moms; this hangout is the day before Mothers’ Day. We love them endlessly and they drive us crazy. How will you celebrate your mom(s)? What do you share with your mom and in what way are you complete opposites? 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 moms!!

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, May 8th, 1-2 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!

Indiamara Zanandréa

Sandra Johnson Name: Indiamara Zanandréa

Age: 31

Where do you call home? I was born and live in a little town in Rio Grande do Sul, a southern state of Brazil that shares borders with Argentina and Uruguay.

Education/Career: I took a technical nursing course after finishing high school but didn’t get a degree because at that time FA was progressing fast. I chose to take courses over the Internet because they were shorter. So far, I have taken almost 10 courses. I love to study and learn new things and I intend to continue taking courses online. Due to the physical limitations that FA brings me, it is much more comfortable for me. I can do it from anywhere if I have a notebook, a cell phone or tablet and, of course, a good Internet connection.

Who do you live with? I am single, have no children and I live with my parents.

What’s a typical day for you? I usually wake up early, have a good breakfast and then do my physical activities. After that, I study and plan the activities for the rest of the day. Generally, during the day, I help my mother. She works with direct sales and I do it all over the Internet. At night I like to study, eat something light, go to bed and wake up early the next day.

Megan Sonja Clegg

Sandra Johnson Name: Megan Sonja Clegg

Age: 25

Where do you call home? UK

Education/Career: Forensic science diploma, health and social care diploma

Who do you live with? My parents.

What’s a typical day for you? I usually just stay at home.

Amanda Oliver

Sandra Johnson Name: Amanda Oliver

Age: 18

Where do you call home? In the countryside in the middle of Sweden.

Education/Career: I am studying to be a horse groomer and in the summer I am graduating from high school. My goal with my education is to be able to work with horses, to be a horse trainer, and also to train other riders. Perhaps in the future, I am able to hold riding lessons for others with a disability, or that they can come and just be in the stable and groom and get energy from the horses. FA will probably affect me more in the future, so to train horses probably will get harder for me, but I will do this for as long as I can and my body allows it.

Who do you live with? I live alone in a house with 2-4 cats on my parents’ farm, and they live in a house next to mine. On our farm we have a big stable with, right now, 4 Icelandic horses.

What’s a typical day for you? I wake up in the morning and feed the cats and the horses, then I have school (during the pandemic, we have had online classes and we have had that for almost a year now). After school, I try to do some kind of training with my horse. But somedays I do not have so much energy and these days she gets a day off.

Chrysanthi Zouva

brittany sommerfield Hi! My name is Chrysanthi, I am 37 years old and I come from Greece.

I was diagnosed with FA when I was 20, but I have been experiencing symptoms, such as instability, since I was 17. The diagnosis came relatively quick for me, but it was not an easy process. Between my anxiety about school at the time, and not showing any specific symptoms, it was hard to identify and diagnose the disease. After the diagnosis came, dealing with the disease itself was difficult. I started taking care of my physical health early on and I think that has helped me a lot because for many years I could walk and did not have to use a wheelchair. While I am currently using a wheelchair, I still make sure to stay active by doing hydrotherapy, physiotherapy, and I also love to exercise using a handbike. I believe exercise is key to all neuromuscular diseases and people’s general well-being as well.

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