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FARA
Cure FA
FARA Ambassador ProgramThe 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.
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.
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Name: Leah Alstin
Age: 36
Where do you call home? I live in Victoria, Australia.
Education degree(s): I have two degrees...one is Primary School Teaching and the other is Arts (Sociology).
Who do you live with? I am married to Joel. We have been married for eleven years and have two children — Milla, who is 10 and Chad, who is 8.
Name: Monique Gutz
Age: 32
Where do you call home? I live in Blumenau, in the south and subtropical area of Brazil, where the climate transitions between the predominantly tropical climate of my country and the most temperate climate of Argentina.
Education: I finished high school
Which contribution has FA had to you or your career? FA taught me to value little things, small achievements and to have confidence in the future.
What is a typical day for you? My days are always very busy. I go to physical therapy 4 times a week, plus weekly phono-therapy, occupational therapy and psychologist. I also visit constantly my cardiologist and other medical specialists.
Winter is settling in so let's talk about 'Winter Weather.' How does FA affect your winter experience? How does the cold affect your FA? This hangout will be led by ambassador sisters Noelle and Allison Bouchard.
When: Join us on November 26th at 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 8-9:30 pm 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 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.
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. 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!
Name 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.
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