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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

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!


Ambassador Hangout August 31st

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Our schedules can be hectic! How do you manage? What are your favorite ways to relax? Get away from your busy calendar and hang out with Morgan and Brittany! Wednesday August 31, 8 - 9:30 PM EDT. Every Hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

At FA Hangouts we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

When: FA Hangouts will be the last Tuesday or Wednesday of the month, except on holidays, at 8 - 9:30 PM Eastern
(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 before)
Who: Every Hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.
Where: Hangouts will now be held on Zoom! You do not need an account. An email will go out (at the latest) 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 15 minutes early, but the topic conversations will begin at the top of the hour.
How: Email fahangouts@gmail.com 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.

 
 

Christina Buckalew

Christina Buckalew 1 Name: Christina Buckalew

Age: 21

Where do you call home? Austin, TX

Education: I’m currently working on my associates degree in Business Management at a community college. Next, I will be going for a Bachelors in Business Management, hopefully at Texas A&M. I aspire to acquire a Masters in Business Management from the Business school in Paris, France; but that is still to be determined.

Who do you live with? I live with my parents, my sister, my uncle, three cats and a dog.

What's a typical day for you? I am always doing something different. I am an avid volunteer, I ride horses, I go to physical therapy twice a week, I tutor my cousin, and I enjoy eating out. So, I guess you could say my typical day would be doing something that makes me feel alive.

Shandra Trantham

Shandra 1 Name: Shandra Trantham

Age: 24

Where do you call home? Gainesville, FL

Education (degree(s): I’m starting my 5th year as a PhD candidate in Genetics with the hope of graduating next year. FA has positively influenced my perspective as a researcher, and I ultimately want to continue to bridge the patient and research communities as well as branch out more into advocacy.

Who do you live with? I live in an apartment with my service dog, Abbey, and one of my best friends who also has FA, Christian Maugee.

What's a typical day for you? A typical day for me includes getting up early, feeding/walking Abbey, spending all day at work/school, then coming home to clean, make dinner, relax, and volunteer for FARA.

Robert Manuka

Robert Manuka Name: Robert Manuka

Age: 35

Where do you call home? I live in a sea city called Durres, Albania

Education: I have finished High school

Who do you live with? I live with my wife and my daughter

What's a typical day for you? I like to read books

How long have you known you are living with FA? I was diagnosed with Friedreich Ataxia in 2002 after I took the genetic tests.

Are there any others with FA in your family? Yes, my two brothers also have Friedreich Ataxia

Describe an adaptation and/or transition you have had to take due to living with FA. When I was first diagnosed, I used crutches, then a walker. Now, I use a wheelchair.

Vincent Groot

Vincent Groot at his deskName: Vincent Groot

Age: 43

Where do you call home? Woerden, Utrecht, The Netherlands

Education: I have a Bachelor’s Degree in Human Resource Management. Unfortunately I have never worked in the field because of FA.

Who do you live with? I am single and have no children.

What's a typical day for you? I am still pretty active. I wake up around 6/7 am. I do some stretch exercises (especially legs), then dress. I have breakfast and coffee. Then I’m off to work. I am a graphic designer (career change after FA). I start at 9 am until 2:30 pm. After some coffee I go home to cook and relax.


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Meet The Community

FARA Ambassadors

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