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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


 

Teen Hangouts - April 2018

TeenHangoutsApril18Join the FARA Ambassadors for a Google 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 three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

This month we are beginning to have Teen Hangouts lead by the teens themselves. Kate Walker is our leader this month. The theme this month will be: Comfort Zones; what’s yours? Do you leave your comfort zone and if so how?

When: Thursday, April 26th 8-9PM 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 before.)

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

Where: On Google hangouts 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 (click HERE). 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. 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. Please note: if you have a free Google Plus account it makes it easier for us to invite you and make sure you get the invitation so, we recommend (not require!) getting one.

Please send an email to either address if you have questions.

See you soon!

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Xhesika Peza

XhesikaPeza1Name: Xhesika Peza

Age: 22

Where do you call home? Tirana,Albania

Education: I am studying pharmacy.

Do you have children? No, but I live for that day.

What is a typical day for you? School, physical exercises, and 20 minutes walking

How long have you known you are living with FA? I had symptoms when I was 17 years old,but I refused going to a doctor. In my country there is little specialized medical training for rare disorders, so I traveled to Vienna, Austria. There I was diagnosed when I was 19 years old.

Are there any others with FA in your family? No.

Describe your transition from walking to walker: I still can walk. (In my opinion my walking now is better than before diagnosis!)

Do you have any hobbies or special interests? Traveling, reading books, practicing all the foreign languages that I speak! 

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Read more: Xhesika Peza

Rare Disease Week 2018

RareDiseaseWeek2018FARA Staff and Ambassadors had a significant presence in Washington DC during Rare Disease week. The week kicked off with a showing of “The Ataxian” to over 230 people! The team then joined advocates from the National Organization for Rare Disorders in speaking to legislators from their home states & advocated for them to: join the Rare Disease Caucus to raise public awareness about the unique needs of the rare disease community; help reduce barriers to genetic testing & improve the time to diagnosis; support the repurposing of FDA approved drugs for additional diseases to help save more lives & reduce drug development costs; and increase NIH & FDA funding. Our congress people are listening and do care! Some joined the Rare Disease Caucus & the FA community got a shout out on a legislator’s FB live feed! We learned that: rare disorders are “above” politics; holding ourselves & our legislators accountable will positively impact the process; legislators want to hear directly from patients, and our voices will be heard if we are clear & concise about what we need. Great Job Everyone!  Add a comment

Read more: Rare Disease Week 2018

Corey Pemberton

CoreyPemberton1Name: Corey Pemberton

Age: 32

Where do you call home? Centerville, Ohio

Education (degree(s): Management Information Systems, B.A. Ohio University 2008

What is your relationship status? I am currently single. I live by myself in my own home in Las Vegas, Nevada.

What's a typical day for you? I work weekdays for the Bureau of Reclamation in Boulder City, Nevada. It is about a 30 minute commute ride from Las Vegas. I drive my own car there.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old. (January 2004) I first noticing my balance was off in the summer of 2003.

Are there any others with FA in your family? Yes, my brother, who is 5 years older than me. 

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Read more: Corey Pemberton

Aimee Clifford

AimeeClifford1Name: Aimee Clifford

Age: 29

Where do you call home? New Brunswick, Canada

Education (degree(s): I am a licensed makeup artist.

What is your relationship status? I have a boyfriend, but we don't have any kids. I also live with my parents.

How long have you known you are living with FA? I was diagnosed with FA when I was 14.

Are there any others with FA in your family? My grandmother thought she had MS, but my doctors say she was misdiagnosed.

Describe your transition from walking to walker/wheelchair. I walked all through high school, and a few years after, I sometimes walked arm and arm with people. When I went to beauty school, I used a mail cart for independence. I walked with a cart for quite a while afterwards and when I went shopping I would use a shopping cart. I still don't want to be dependent on a wheelchair and my physiotherapist thinks I'm strong enough to walk with my cart. She wants to get me a walking device to use around the house. I still use stairs holding someone's arm. 

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Read more: Aimee Clifford
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