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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!


Eva Eisenköck

Sandra Johnson Name: Eva Eisenköck

Age: 35

Where do you call home? Grieskirchen, Austria

Education/Career: I graduated from the Federal Institute for Kindergarten Education. I have worked as a kindergarten teacher for 13 years. In 2018 I had to give up work due to the advance of FA. I was able to complete a retraining course as an administrative assistant. Since 2020 I have been working in the citizen service office, where I have various tasks such as organizing the holiday pass for children, holding elections, and public relations work. It was very difficult for me to give up my job as a kindergarten teacher. Now FA took that away from me, the work I do with children is something that I loved more than anything. I am a very consistent and ambitious person and that helped me to see the new job as a challenge. After a while I was able to see the advantages of the new job and was positively surprised at the varied range of tasks.

Who do you live with? I live alone in a flat on the ground floor with a terrace and a little garden.

What is a typical day for you? During the week, I get up early and make my way to work. I work 4 days a week. After work, I like to move: cycling or to the gym. I like to spend time with friends and family: meet up at a café after work, go out to eat or go to the movies. I also like to relax with a book and music in the sun on my terrace.

 

Sophia Sieber-Davis

Sandra Johnson Name: Sophia Sieber-Davis

Age: 30

Where do you call home? I live on a few acres in rural Northern California with my husband, children, dog and chickens.

Education/Career: While I haven’t received a formal degree, I have college background in art history, painting and psychology. Especially in dealing with additional illness in my early adulthood, life has led me on a creative path. I like to share how I use art as a therapeutic tool and encourage others to find liberation through artistic creation. Recently, I’ve been studying cell biology and neuroscience through online universities to gain a better understanding of my disease (as well as understanding potential treatments), and the inner workings of the body.

What is a typical day for you? I am fortunate to stay home with my kids while I pursue my online studies and create artwork. It does take a lot of self-discipline to be your own employer while simultaneously facing the challenges presented by FA (and motherhood).

 

FARA Teen Hangouts - September 2021


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 FUNdraisers. Fall is a busy time for FARA fundraisers. Is it busy for your patient organization too? Have you gone to one? Do you want too? Did you meet new friends? Wear your favorite fundraiser T if you have one.

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, September 11th, 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!

Tony Henri

Sandra Johnson Name: Tony Henri

Age: 28

Where do you call home? St Georges des Groseillers in France.

Education/Career: Diplômé national du brevet (niveau collège) national diploma of the patent.



Who do you live with? With my darling and my soon to be three year old son

What is a typical day for you? I wake up then tend to Lucas (make him breakfast, wash him, dress him up), do dishes, prepare lunch for Lucas, more dishes, take care of the laundry, clear the table, put Lucas down for a nap...

 

Keylla Patricia Melo

Sandra Johnson Name: Keylla Patricia Melo

Age: 44

Where do you call home? I live in Natal, Rio Grande do Norte, in the furthest east part of Brazil.

Education/Career: I'm a lawyer. I went to law school and later got two postgraduate degrees: one in Family and Inheritance and the other in Social Security law.



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

What is a typical day for you? Currently my routine is remote work, but when it is necessary I go to the Forum or to some public or private entity as part of my professional duties.

 

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