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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!


Olivia Ramazio

Sandra Johnson Name: Olivia Ramazio

Age: 21

Where do you call home? Florida

Education/Career: I have an Associates degree in arts and I am currently getting my Bachelor’s degree in psychology. I believe that my FA will not affect my future career.

Who do you live with? My parents.

 

Kate Annetts

Sandra Johnson Name: Name: Kate Annetts

Age: 38

Where do you call home? Brighton, UK

Education/Career: BA Honors Media Writing

Who do you live with? I live on my own.

What is a typical day for you? I’m an early bird even on days I don’t work. I have recently started exercising and after breakfast I’ll do a workout from YouTube. I work part-time for a local charity for people with disabilities, so some days I do a shift or two there working on reception or doing admin. 2 years ago I got a mobility scooter, which changed my life with regards of how much I could do. I ride it to work and on my days off I can use it to go shopping or to meet friends.

 

Snehal Shinde

Sandra Johnson Name: Snehal Shinde

Age: 25

Where do you call home? Aurangabad City, Maharashtra, India.

Education/Career: I have a degree in Commerce and cannot pursue further education due to physical limitations. As the FA grew, I changed my career path. I am currently studying stock market business and this is my career endeavor, so that I can work from home.

Who do you live with? I live with my parents and brother.

What is a typical day for you? I stay home all day. I do my own work and clean myself. I try to depend on others at least, with some help coming from the family. Mom does all the housework and I help her with it. Then I exercise as much as possible. Then I have some time for study, TV, mobile and reading. Day is busy with this work.

 

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 personal style. How do you show it? Your clothes? If so, what works for you? How you decorate your room? Stickers on your wheelchair? Your art? Let us know how you do it and learn how others do it! 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 personal style!!

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: Thursday, September 30th, 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!

Maria Monteiro

Sandra Johnson Name: Maria Monteiro

Age: 26

Where do you call home? Trás-os-Montes and Alto Douro, Portugal

Education/Career: I work in Culture. I got a degree in Archeology and later a postgraduate degree in Museology, with specialization in Museums of the XXI Century. Being a carrier of FA allowed me to understand the disability at a personal level, considering possible obstacles that the population with special needs faces in order to have access to cultural goods and events. I don’t want to generalize or translate the word 'accessibility' as 'access with ramp', but in recent years I have tried to equip myself with skills that will help me to counteract this unfortunate trend. At the moment I work in a local literary institution.

Who do you live with? I am single and live with my mother and seven pets.

What is a typical day for you? My day starts early. I like to train in the morning (cycling). Then it's work, it's leisure, it's writing my travel diary and getting back to exercising because it's 6pm and at this time, I'm going horseback riding. Afterwards, it's dinner and going out with friends.

 

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