Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

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

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox


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!


Chrysanthi Zouva

Chrysanthi Zouva Name: Chrysanthi Zouva

Age: 37

Where do you call home? Athens, Greece

Education (degree(s): My academic journey began with a 4-years bachelor’s degree in Geology and Geoenvironment from the National and Kapodistrian University of Athens. Due to my scientific curiosity, I continued my studies in an MSc and afterward at a Ph.D. level related to Environment and Development, linked to the Spatial Decision Support System at the National and Technical University of Athens. The range of my studies, combined with my expertise and passion will give me the opportunity to move a step forward in the research of FA in my country.

What's a typical day for you? Every morning I start my day with therapeutic swimming or gym or training with my handbike. Later I usually stay at home, cooking or working at my laptop.

How long have you known you are living with FA? I was diagnosed at the age of 20, certified by a DNA test, but my first symptoms began at the age of 17, after instability issues.

Are there any others with FA in your family? No, just me...

Sean Sommerville

Sean Hello my name is Sean Sommerville. I started experiencing symptoms of FA in high school while I was pursuing my dream of becoming a professional pilot. It wasn’t until after my freshman year in college that I decided I wanted to get my poor balance looked at by a professional. After a year of being poked and zapped more times than I can remember, I finally got diagnosed with FA.

The diagnosis was one of the hardest things to come to terms with in my life. While that diagnosis took me out of the cockpit, I still earned my commercial pilots license with single engine land, multi-engine land, and instrument ratings, as well as my certified flight instructors certificate all while experiencing symptoms of FA. I hope to one day return to the cockpit when a cure is reached, but in the meantime I will do all that I can to help my fellow FAers, raise awareness and money for this disease, and push my own limits biking, hiking, and facing the physical challenges that FA comes with to prove to myself that it won’t keep me down.

Esteban Luis Grieb

Esteban Luis Grieb Name: Esteban Luis Grieb

Age: 44 (How time flies :)

Where do you call home? I live in Steyr, Upper Austria/Austria/Europe but I was born in Buenos Aires, Argentina

Education: Well, I graduated at our commercial high school (HAK)

Who do you live with? Enjoy living alone in my accessible flat here.

What's a typical day for you? OK … I’m retired so I have enough time for me and my favourite things to do. Every day I wake up at 7 … Then I meditate, doing my exercises, do physical therapy, watch sports like basketball … Basketball is my love and keeping physically active in general is the most important thing in my life. I’m obsessed with being active.

Join our Teen Hangout Thursday

Teen Hangout 9-24-2020 Thursday 9/24 8-9 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.)

Our Thursday night hangout this month is a discussion lead by FARA ambassador, Madelyn Fredrick about music. Do you have a favorite group or song? That one who always makes you feel good in any situation? Do you make music, what musical instrument do you play? Music remains an unbeatable (or bad mood beatable [ha, ha]) remedy against stress.

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 counselling.

When: Thursday, September 24th, 8-9 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!

André de Lucca Venturini

Andre Venturini Name: André de Lucca Venturini

Age: 27

Where do you call home? Sao Paulo, Brazil

Education: Degree in business administration at Universidade Presbiteriana Mackenzie (2013)

What is a typical day for you? I practice physical therapy, gym, use my blog to help people and occasionally go to meetings because next year I'm going to try entering in Camara de Sao Paulo as a "Vereador" to represent people with disabilities

Page 10 of 128

SHARE

FacebookTwitterLinkedInYoutube
price.jpg

 

Archived in
  the Ambassador Blog


Site Map     Privacy Policy      Service Terms      Contact      Charity Navigator