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FARAFARA Cure FA

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!


 

Teen Hangout - February 2019

February Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). 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 three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going. This hangout will be led by teen Kate Walker.

The theme: Fitness and ataxia. What motivates you? What do you do? Do you want to learn what others do? It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

Read more: Teen Hangout - February 2019

Nicole Kramer

Nicole KramerName: Nicole Kramer

Age: 24

Where do you call home? Chicagoland suburbs

Education: Bachelor's Degree in Sociology, Certificate in Criminology, and Associate's of Science

What is your relationship status? Who do you live with? Not in a relationship and not currently looking. I live with my mom right now.

What's a typical day for you? I work right now. Some days I start at 5:30 am or as late as 9 am. Each day is different. When it is nicer weather I take my service dog for a 2 or 3-mile walk as often as possible.

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Read more: Nicole Kramer

February FA Hangout 2019

February HangoutThis month's hangout topic is "What Do You Do to relax?" Lake will lead this hangout event, with RJ at her side.

When: Join us the February 26th or the 27th 8-9:30 PM. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30pm EST each of the two days.

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.

Read more: February FA Hangout 2019

Lesley Eertink

Lesley 5Name Lesley Eertink.

Age: I am 32, but mentally feel like 25 

Where do you call home? Amsterdam, The Netherlands. (Europe)

Education: Masters in Law.

What is your relationship status? Do you have children? I am single and living on my own. I have no children. Still waiting for the perfect match! Still no luck in that though.

What's a typical day for you? My day always starts with a healthy breakfast. I work 4 days a week as a company lawyer for the Dutch government from Monday till Thursday. Besides that, I exercise 5 days a week to keep my body in shape. Also because I am a bit vain. After work and exercise, I prepare a nice and healthy meal for myself. And when there is time left I have time for my addiction...Netflix.

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Read more: Lesley Eertink

Geoffrey J Fox

Geoffrey FoxName: Geoffrey J Fox

Age: 39 years old

Where do you call home? Northern Michigan

What is your relationship status? I am a single guy with no children. I live alone with my dog, but my mom and stepdad live a couple houses over when I need help.

What's a typical day for you? My days are about creation. I have an undeniable urge to create. I guess the simple answer would be I spend my days writing stories, poetry or scoring songs.

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Read more: Geoffrey J Fox
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