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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!


Jafar Marizapoor

Jafar Mirzapoor Name: Jafar Mirzapoor

Age: 25

Where do you call home? I am an Afghan refugee and currently I live in Iran.

Education (degree(s): I am graduated from high school and I study computer by myself

Who do you live with? With my parents and siblings (they are patients too)

 

Joseph Boon

Joseph Boon Name: Joseph Boon

Age: 32

Where do you call home? Palmerston North, Aotearoa New Zealand

Education (degree(s): Bachelor of Arts double major from Victoria University of Wellington. I am considering getting a further teaching qualification, but I haven’t made up my mind.

Who do you live with? I live with my sister.

What's a typical day for you? I spend my days painting, drawing, reading, writing letters, exercising, dog walking, watching good films and TV, and spending time with my young nieces and nephew. I also like to meet friends in cafes. Depending on my level of energy I may do any, or all of these things in a normal day.

Teen Hangout September 10


Join the FARA Ambassadors for a hangout for teenagers with ataxia. 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 two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout, we will talk about pets and service animals. Bring pictures or put your pet/service animal on camera…we want to see the cuteness!!! How is your pet/service animal there for you? Do you have funny stories?

When: Saturday, September 10th 1 - 2 PM ET
(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: Teens ages 13 to 19 (Please note: teens of all ages will be together)
Where: On Zoom so if you have access to the internet and 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 requested from and emailed to Madelyn at madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you have consent or are 18 or 19, Jean will send you the Zoom link once things are set up. If you think you should've gotten the link and didn't, email Jean.

18 and over: just let us know that you want to come by emailing us at madelyn.frederick@gmail.com. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom.

Been before? If you already have permission or you’re 18+, Jean will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don’t get one, email Jean at jeantw62@gmail.com.

Pop an email to Madelyn if you have questions!

 

 

Ambassador Hangout August 31st

Mobility Devices Image
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.

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