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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!


Andrea Kiess

Andrea Kiess Name: Andrea Kiess

Age: 44

Where do you call home? Wichita, Kansas

Education/degrees: Bachelor’s degree in Psychology and Master’s degree in Marriage and Family Therapy

What's a typical day for you? I usually go to the gym 3 times a week. Other days are spent going to appointments, running errands, and volunteering for FARA. Of course, I always make time to watch TV and hang out with family and friends!

Muhammad

Muhammad Name: Muhammad

Age: 30

Where do you call home? Iran

Education (degree): Bachelor’s degree

Who do you live with? Parents

What's a typical day for you? I work at home and online in the Iranian stock market.
How long have you known you are living with FA? Sixteen. I noticed it due to imbalance.

Are there any others with FA in your family? No

Teen Hangout November 12th


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 your favorite book. Maybe your favorite is really a comic strip, graphic novel, or blog. What do you read for fun? Why does it speak to you? Tellus about our next favorite read!

When: Saturday, November 12th 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!

 

 

Marzia

Marzia Name: Marzia

Age: 28

Where do you call home? I am Afghan refugee and I live in Mashhad, Iran.

Who do you live with? With my older parents and also my patient siblings.

What's a typical day for you? I use my wheelchair and go to my classes.
How long have you known you are living with FA? When and how were you diagnosed? I had some symptoms of the disease before I was 18 years old but it got serious about 10 years ago, I’ve used a wheelchair for the last three years. It’s about one year that I’ve used an electronic wheelchair.

Are there any others with FA in your family? Yes two brothers and one sister.

Edanur Sekmen

Edanur Sekmen Name: Edanur Sekmen

Age: 18

Where do you call home? Turkey

What is your education? I am a high school graduate.

Who do you live with? I live with my mother, father and siblings.

How long have you known you are living with FA? I was diagnosed with FA 1.5 years ago.

 

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Ambassador Blog Archives


 
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Meet The Community

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