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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

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!


Dragana Obadić

Dragana Obadić with her dog My name is Dragana Obadić. I was born on October 20th 1989. I grew up in the small town of Glina (Croatia) where I finished primary and secondary school. I graduated in 2014. from the Faculty of Management in Tourism and Hospitality; master of economics. I have two sisters and one brother.

By my twenties, I practiced majorette dance, spun in a circle, danced in heels, climbed ladders and rooftops, rolled on barrels like in a circus.

After college I moved to Čakovec where I live with my husband. I worked in a hotel reception. Currently I am on sick leave. I was researching what was wrong with me because I was walking with difficulty. In 2021. I went on a genetic test and for my 32nd birthday the result confirmed FA.

Teen Hangout February 11th


Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout, we will talk about The Super Bowl and winter sports. Do you have a team? Do you watch the Super Bowl for the ads or the half time show? Maybe you don’t watch the Super Bowl at all. What are your favorite winter sports or activities?

When: Saturday, February 11th from 1 to 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 before)
Who: Teens ages 13 to 19 (Please note: teens of all ages will be together)
Where: On Zoom so if you have access to the internet and 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 sign a consent form. This should be requested from and emailed to Madelyn at madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you have consent or are 18 or 19, Jean will send you the Zoom link once things are set up. If you think you should've gotten the link and didn't, email Jean.

18 and over: just let us know that you want to come by emailing us at madelyn.frederick@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 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 Madelyn if you have questions!

 

 

Hamilton Family

Amelia Hamilton Name: Amelia Hamilton

Age: 10

Where do you call home? Ohio

Education: Grade 5

Who do you live with? I live with my mom, dad, my older sister, a cat and two bunnies.

What's a typical day for you? I love to sleep in! But most days I wake up earlier and if I get dressed, eat breakfast,and brush my teeth fast enough I get to play Super Mario with my parents before I get on the bus. I go to school where my favorite class is math and then come home, feed my bunnies, play, do my homework, go to the gym and then eat dinner while we watch the Great British Baking Show. Bedtime usually involves reading with my mom.

Hüseyin

Hüseyin Name: Hüseyin

Age: 34

Where do you call home? İzmir, Turkey

Education: I am graduated from University (bachelor degree).. In the future I want to educate for master in the field of financial mathematic. I guess FA will effect negatively going to university by myself, but I will never give up and I will have success with my goals both in school life and in my business life...

Who do you live with? I live with my older sister and my mother.

What's a typical day for you? I always go to my work office on weekdays, until 5 p.m.

Teen Hangout December 10th


Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout, we will talk about winter sports and activities. Do you deal with cold, snow, ice, and short days during winter? Maybe where you live days are warm and sunshine is plentiful. Either way we want to learn about what you do for winter fun. Maybe what you do will be someone else’s next activity.

When: Saturday, December 10th from 1 to 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 before)
Who: Teens ages 13 to 19 (Please note: teens of all ages will be together)
Where: On Zoom so if you have access to the internet and 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 sign a consent form. This should be requested from and emailed to Madelyn at madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you have consent or are 18 or 19, Jean will send you the Zoom link once things are set up. If you think you should've gotten the link and didn't, email Jean.

18 and over: just let us know that you want to come by emailing us at madelyn.frederick@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 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 Madelyn if you have questions!

 

 


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Ambassador Blog Archives


 
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Meet The Community

FARA Ambassadors

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