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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!


 

Patient Perspective: Christina's Experience Participating in a Clinical Trial

PatientPerspective Christina1My name is Christina Logan. I am 27 years old and have been diagnosed with Friedreich’s Ataxia for 7 years now. I am a strong advocate for the FA Community; I once was a FA Ambassador who managed the social media accounts for the Friedreich’s Ataxia Research Alliance (FARA), and I am now enrolled in my third clinical trial. I live independently and work full-time in Philadelphia, PA. I have an amazing support system of family, my fiancé- Justin, friends and FAmily who help me do what I do every day.

I truly believe in the quote, “hope is stronger than fear.” Hope is an emotion that my family and I feel after we attend the Friedrich’s Ataxia Symposium hosted by the Children’s Hospital of Philadelphia (CHOP) every year. The past symposium, held in October 2017, Takeda Pharmaceuticals was discussed during the research pipeline presented by FARA’s Executive Director, Jennifer Farmer. She mentioned that Takeda Pharmaceuticals had a phase 2 trial planned for TAK-831. The purpose of this study is to see if TAK-831 improves daily activities of life by evaluating upper limb motor function and manual dexterity. What stuck out to me the most is the possibility of improving daily activities of life and dexterity. 

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Brittany Waters

BrittanyWaters1Name: Brittany Waters

Age: 30

Where do you call home? Maine

Education: Bachelor's degree in Public Relations

What is your relationship status? Do you have children? Married with 2 small children.

What's a typical day for you? I wake up really early with my toddler and then I keep both kids alive all day.

How long have you known you are living with FA? I started to realize there was a problem when I was a senior in high school. I wasn't diagnosed until I was 22 though, because I put off the test for a while so I could focus on my first couple years of college. I was a little afraid to know the truth too.

Are there any others with FA in your family? As far as I know, I'm the only one. Nobody else wants to be tested though.

Describe your transition from walking to walker/wheelchair. I still furniture walk at home, but I had to start using a wheelchair when I go places about two years ago. The hardest part for me has been getting over my pride. I imagine that people view me as a lesser human because of my obvious disability. I deal with it by being as present as I would be without the chair. I fight the urge to try to disappear. 

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Becky Taylor

BeckyTaylor1Name: Becky Taylor

Age: 42

Where do you call home? Vancouver, Washington

Education (degree(s): Masters in Teaching

What is your relationship status? Do you have children? Married for 11 years. No kids, unless you count my 24 4th graders and my yellow lab, Claire.

What's a typical day for you? I wake up every day at 5:30, leave the house eat 7:00, and get to work on 7:30. With teaching, no two days are ever alike! But, that is what I love most about my job. I leave work any time between 3:30 and 5:30, depending on if I have meetings or something else I need to do. My evenings are usually very laid-back. My husband and I usually connect with our friends once a week for dinner and a tv show. Maintaining strong friendships is so important to me. 

How long have you known you are living with FA? I was diagnosed with FA when I was 21. I first noticed symptoms when I was becoming dizzy while running down stairs.

Are there any others with FA in your family? I am the youngest of three girls. My middle sister also has FA.

Describe your transition from walking to walker/wheelchair. My progression, luckily, has been relatively slow. I continue to walk with my walker at home, but I use a scooter at work and when I travel. I walked unassisted for 9 years after my diagnosis. Around age 30 I started using a cane, but that didn’t last too long. I then got my first rollator, and began to use a scooter at work at age 38. 

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Kim Swiatek

KimSwiatek1Name: Kim Swiatek

Age: 51

Where do you call home? Tucker, GA

Education: I chose being a mother and housewife. Progression has stopped any other career goals.

What is your relationship status? Do you have children? Raised a wonderful son, I also have a beautiful daughter-in-law and granddaughter. I’m divorced and live with my boyfriend of 9 years.

What's a typical day for you? Basically get up, eat, get ready for the day with my caregiver. Play on computer, watch Netflix then sometimes get out and go shopping.

How long have you known you are living with FA? I was diagnosed at the age of 25. It was in March of 1992 before the gene was discovered. I went through 5 neurologists who didn’t have a clue about my balance and coordination. Finally found a doctor in Atlanta who knew right away what it was, as she had FA patients.

Are there any others with FA in your family? My sister had it. She passed away in 2016.

Describe your transition from walking to walker/wheelchair: I noticed clumsiness in High School and could not physically keep up with my peers. I would hold on to furniture and people as it progressed, then started using a walker after I was diagnosed. I used it for 5 years before I realized I needed a wheelchair. The hardest transition was having to give up driving, which I did at the same time. I realized I had to give it up after having a wreck with my son in the car.  Add a comment

Read more: Kim Swiatek

Teen Hangouts - March 2018

TeenHangoutsMarch18Join the FARA Ambassadors for a Google hangout for teenagers with ataxia. it is an hour-long web-based hang out. If you don't have ataxia, you are not allowed to participate in the hang out. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

The theme this month will be: a discussion about the film The Ataxian. We ask participants to view the film first and bring your thoughts and questions. You can stream the film at:
Amazon
iTunes
Google Play

*Teens who are signed up, with the appropriate consent can, upon request, be reimbursed for renting the film.

We plan to be joined by a couple of our fellow ataxians featured in the film. While we can’t guarantee that, it is the plan and we are super excited.

When: Thursday, March 29th 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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