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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!


 

FA Hangouts 6

The FARA Ambassador Program presents the sixth FA hangouts with the theme of Careers and FA.
 
We have had several rounds of successful FA hangouts. We laughed, we connected, we hung out, we learned from and about each other...it was so fun! 
 
This month’s hangout is open to anyone with FA and a translator if needed. Tell us how your career is going, your struggles and your successes, and/or get career tips from people who are making it happen. Hangouts will be held Wednesday June 24 and Thursday June 25 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9PM EST both days.
 
More times will be added if needed. Email Mary at mary.bircher@gmail.com to sign up. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone.
 
An email will go out 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room a half hour early, but the topic conversations will begin at the top of the hour.
 
See you soon!
 
 

Crystal

Name: Crystal 
 
Age: 36
 
Where do you call home? St. Louis, MO
 
Education (degree(s):  Just graduated (last weekend) with an Associate of Arts in Teaching
 
What is your relationship status? Do you have children? I have been married for 16 years and have a 10 year old son.
 
What's a typical day for you? My typical day will be changing. For the last 3 years I have been in school, so my days have consisted of school, homework, housework, and taking my son to his extracurricular activities (baseball, martial arts, gymnastics, cub scouts, and anything else he has decided to try over the years). Since January of this year, I have been going to the gym 3 days per week.
 
Since I am not in school anymore, I am trying to catch up on my house work, since I have not done as much as I would have liked in recent years. I go to the gym 3 days a week. This takes up half of my day because the gym is 45 minutes away one way and my workout is 90 minutes. Also, my son is in cub scouts and my husband is leader and I am assistant leader. Planning activities for our den and also assisting our cubmaster is very time consuming. Now that I am out of school I can devote more time to planning events for our scouts.  I also hope to relax more and read books for fun again (I have not done much leisure reading since I started  college).
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Read more: Crystal

Spotlight on Iain Fryatt

I stumbled across Iain on Twitter. His handle is @IainsKiliTrek. This made me wonder what his Kili Trek was. So I checked out his Twitter page. Well, what I found was that Iain is awesome. He has FA and uses a wheelchair and climbed Mount Kilimanjaro.  I had to find out more. It follows. It is not hard to tell that Iain loves life as much as he loves a big challenge. 

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Read more: Spotlight on Iain Fryatt

3rd Annual 5k Mother's Day Race for Christina

Do you have a person in your life that you would do anything for? For some people it's a significant other, a parent, or teacher. For me, it is my 24 year old sister, Christina. I remember the day my parents told me that I was going to be a big sister. I was instantly obsessed with Christina. She became my best friend even before she was born.

Growing up, Christina and I were extremely close. We would never do something without the other sister being included. During the summer of her senior year of college, my family and I felt something was off with Christina's walking. We would just tease her that her one leg was longer than the other, however, after a huge fall, we knew it was something greater. The day we found out she was diagnosed with Friedrich's Ataxia, a life shortening neurological disease, I spent all night crying to my mother, "How will we get through this? How can I be strong for her? What can I do?"

Read more: 3rd Annual 5k Mother's Day Race for Christina
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