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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!


Dr. Georg Herdt

Sandra JohnsonName: Dr. Georg Herdt

Age: 40

Where do you call home? Oxford, UK

Education/Career: PhD in Architecture

Who do you live with? I am married and have two lovely young children.

What’s a typical day for you? Get up super early, drink the first of many espresso. Breakfast with kids and do the nursery run. Depending on my availability I try to train as much as possible. After supper with the kids, my wife and I calm down and go to bed early to start getting ready for the next morning.

FA Teen Hangouts - April 2021

Teen Hangout 9-24-2020 Saturday, 4/10 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 school. In some states kids are going back to school full time. Tell us what is going on for you! Are you happy or struggling with school right now? If it is hard for you, do you have ways of coping? 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 school!

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, April 10th, 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!

Megan Dewar

Sandra JohnsonName: Megan Dewar

Age: 23

Where do you call home? Lekwungen Territory (Victoria, Canada).

Education/Career: I have recently completed a BA in Environmental Studies, a BA in Sociology, and a certificate in the Human Dimensions of Climate Change. Currently, I am excited to explore the intersection of art and disability while continuing education to become an art therapist.

Who do you live with? I live with my friends, who are also my roommates.

What’s a typical day for you? During the current pandemic and winter days, I spend most time in my home listening to music, doing art, writing for my blog, cooking with my roommates or going for drives. I feel most empowered through the process of creation, so I am constantly immersed in art, craft, and woodworking projects. Additionally, I enjoy contributing to mutual aid initiatives in my community, I currently volunteer and organize with a grassroots food security group and a radical bookshop.

Corinne Oehen

corinne oehen My name is Cori, I‘m 35, and I live in the German part of Switzerland.

I was diagnosed when I was 16. My youngest brother had early symptoms, so they diagnosed him when he was 10. The doctors told to my parents it’s hereditary, so they tested my DNA too. I started to use a wheelchair 13 years ago. Twice a week I do physiotherapy, with home work-outs and Yoga too, I try to stay fit.

With the diagnosis of FA, my life changed a lot. I learned to accept and to enjoy life with ups and downs. With FA, life is not over. Any of us humans, have a backpack to carry; so keep carrying and smiling. I love traveling, surfing, cooking and yoga.

Ana Clara Andrade

Sandra JohnsonName: Ana Clara Andrade

Age: 14

Where do you call home? I live in Heliopolis, in the northeast of the State of Bahia, Brazil

Education/Career: I am a ninth grader and my dream is to be an interior designer.

What’s a typical day for you? My mornings are reserved for my school classes. In the afternoon I do exercises. In my free time I enjoy painting and playing with my toys and games.

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