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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!


 

The Miller Family

Miller Family 1 

Name: Sean and Ryan Miller

Age: Sean (8), Ryan (6)

Where do you call home? Denver, Colorado

Education: Sean (3rd), Ryan (Kindergarten)

Who do the boys live with? They live with their parents and 2 older siblings.

What's a typical day for you? A typical day involves getting ready for school, going to school, playing with friends, playing video games and watching some YouTube.

How long have you known Sean & Ryan are living with FA? Sean was misdiagnosed with CMT at the age of 4. There was something always off with his gait and he fell more than other children his age. It wasn't until we had an abnormal EKG and discovered cardiomyopathy, that the cardiologists suggested FA instead of CMT. We had a blood test done and it was confirmed when Sean was 5.

Ryan doesn't show symptoms (only notice minor balance issues, but would not know unless you know about FA). We wanted to get him tested for FA, because we just wanted to know. Ryan also tested positive for FA when he was 5.

Are there any others with FA in your family? No one else besides Sean and Ryan that we know of.

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Read more: The Miller Family

Beverlee Blackston

Name: Beverlee BlackstonBeverleeBlackston1

Age: 30

Where do you call home? Paducah, Kentucky

Education (degree(s): Associate's Degree in Arts and Bachelor's Degree in Communications and Theater

What is your relationship status? Do you have children? I'm married and have a 3 year old daughter, Freya. I've been married for 7 years.

What's a typical day for you? I wake up around 7:30 when my daughter wakes me up. We watch cartoons and play with her toys until naptime. When she takes a nap I do my Yoga practice and meditate, sometimes I write or practice my divination with Runes or Tarot Cards. When Freya wakes up we have dinner and play until bedtime. When the weather is nice we spend a lot of time outside on our farm.

How long have you known you are living with FA? It's been 10 years since I was diagnosed. December 2007 was when I found out. My husband noticed that something was off so he told me I should go to the doctor. It took awhile, but they finally figured it out.

Are there any others with FA in your family? I'm the only person on both sides of my family that has FA. 

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Read more: Beverlee Blackston

FA Hangouts - April 2018

FAHangouts April18The FARA Ambassador Program presents an FA Hangout talking about: Life Hacks! Allie and RJ are leading the discussion. So this is the perfect opportunity to learn some special tricks for living with FA.

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!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday April 24th, Wednesday, April 25th, and Thursday, April 26th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EDT each of the three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. 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.

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.

See you soon!

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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
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