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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!


November FA Teen Hangout 2019

november 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. November's hangout will be led by FARA Ambassador Kyle Waterman.

The theme will be: Exercise, Nutrition, and Health. Do you have an overall wellness routine? How do you make it fun? Do want some ideas? 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!

When: Thursday, November 21st, 8-9 PM ET (The hangout opens 30 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 WebEx before.)

Who: Teens with ataxia ages 13 to 19 (Please note: all the teens will be together, but we plan to host separate hangouts for young and older teens in the future)

Where: On WebEx 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 sign a consent form. This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Additionally, they can get a consent form here if they need to. 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 WebEx. 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 WebEx.

Pop an email to either address if you have questions!

Ben Tyler

Ben Tyler 2Name Ben Tyler

Age 35

Where do you call home? Alton, IL (across the river from St. Louis, MO)

Education degree(s): Bachelors of Science in Nursing, I am an RN. I am not able to work as a bedside nurse due to FA. Fortunately, there are many areas I am able to work. I am in Case Management at Barnes Jewish Hospital in St. Louis.

Read more: Ben Tyler

Giovanna Moreschi

Giovanna 2Name: Giovanna Moreschi.

Age: I am 20 years old.

Where do you call home? São Paulo – SP – Brazil

What are your educational goals? I study courses in psychology. Even though I have FA and many difficulties, I do not give up and do not stop believing that I will build my career!

Who do you live with? I live with my parents and my two sisters.

Read more: Giovanna Moreschi

Kay Krankel

Kay KrankelName: Kay Krankel

Age: 83

Where do you call home? Currently, my home is a skilled nursing facility in Scranton, PA.

Education: I made it through one year of college when I got the job I wanted.

Who do you live with? I have been married for 60 yrs. We have five children and sixteen grandchildren.

What's a typical day for you? Currently, a typical day for me includes lots of reading, playing bingo, and occupational therapy. Every other week, facility-sponsored entertainers visit.

Read more: Kay Krankel

October FA Teen Hangout 2019

October Teen HangoutsJoin 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. October's hangout will be led by FARA Ambassador Andrea Garcia.

The theme will be: Back to school part 2. How is the school year going? How do you talk to friends and school staff about your ataxia? What are your strategies for studying or socializing? We will be joined by 2 people with Friedreich's ataxia currently in college/grad school. 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!

Read more: October FA Teen Hangout 2019
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