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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!


FARA Teen Hangouts - August 2021

Teen Hangout 3-13-2021 Thursday, 8/26 7-8 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.) 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 during our 2nd hangout, we will be talking about the beach. Have you been recently? Hate it? Love it? Do you avoid it? If you went recently, how was the accessibility? 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 the beach!!

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, August 26th, 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!

FA Hangouts - August 2021

20210114_123951_0000 Noelle and Allison like to read! Do you? What genres do you like? Kindle or print? Come check in with the Hangout Team's unofficial book club! August 31, 8-9:30Pm EDT!

Kai Eickler

Sandra Johnson Name: Kai Eickler

Age: 33

Where do you call home? Waltrop, Nordrhein-Westfalen, Germany

Education/Career: I don’t have any education due to my disease, but I am artistically very gifted which is also my job.



Who do you live with? I lived with my girlfriend from 2013 to 2019. After the separation, I now live in assisted living.

What is a typical day for you? I get up at 6 am and slowly get ready for work. Work is until 3:30 p.m. Going to work is very important to me because of the regular daily routine. I feel useful, am free from thoughts, get to know people, and I am not always at home.

 

John Cernosek

Sandra Johnson Name: John Cernosek

Age: 38

Where do you call home? Silver Spring, Maryland

Education/Career: Bachelor of Science in Decision and Systems Sciences from Saint Joseph’s University.



Who do you live with? My partner, Yiomarie Rodriguez, and I live in an apartment.

What is a typical day for you? A relaxing morning with news and Jeopardy from Alexa; coffee, banana, cereal. Two or three days a week I go to the gym in my building. I move through my own version of physical therapy in the style of about a million different symptom-battling activities in the apartment. I will talk about them soon. I read, write, and research most days for a pamphlet I’m hopefully wrapping up soon. Yiomarie and I eat dinner and watch TV in the evening. At night, I shower and water the garden; or work on a puzzle; or putz around with headphones blaring.

 

Madison Hardwick

Sandra Johnson Name: Madison Hardwick

Age: 20

Where do you call home? Waco, Texas!

Education/Career: My major is in Psychology and I will graduate in the spring from Austin Community College with my Associates of Arts and transfer to Tarleton to get my Bachelors. I want to be a Marriage and Family Therapist, because therapy saved my life this past year and I want to help others cope in healthy ways. I owe my improved mental health to therapy and it’s why I’ve come so far in my acceptance of my FA diagnosis.



Who do you live with? I live with my parents and younger brother & sister who are twins!

What is a typical day for you? I do my classes online in the morning and help watch my 4 month old niece all day. I do physical therapy twice a week, and do home exercises on the days I’m home. I hang out with family, read, and cuddle with my dogs!

 

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