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FARAFARA Cure FA

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

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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!


 

Fiona Lamond

Fiona Lamond 3Name: Fiona Lamond (Fi)

Age: 33 (May 1985)

Where do you call home? Sydney, Australia

Education degree(s): BA Ancient History, BA Media and Cultural Studies

Who do you live with? I live with my parents and my younger (by two years) brother. 

 

What's a typical day for you? A typical day for me starts with me finding my glasses and putting on shoes and socks because that gives my feet a bit of stability and traction for my standing transfer into my wheelchair. A trip to the loo. Then my routine changes depending on the day ahead if I'm going out to shop/see a movie/meet up with friends/explore/have speech or physical therapy/or to be out and just have a coffee (and a cake!). If I'm staying home I'll have brekkie and then exercise with weights, resistance bands, and stretches, read this month's book for book club, read/use social media, play games on the iPad and catch up on the telly.

How long have you known you are living with FA? I was diagnosed with FA when I was eleven after I was struck with Guillain Barre. I bounced back to my normal after that but the doctor said my normal wasn't normal. A blood test revealed that my parents were Carriers, I had FA, and my brother was completely in the clear.

Describe your transition from walking to walker/wheelchair. I started using a walking cane my first year of university. And quickly learned all the short cuts on campus. When I went back for my second degree I used a manual wheelchair fulltime and tried to organize my classes to start at the top of campus and move downhill throughout the day. In my last year, renovations made my campus route inaccessible so I bought an electric wheelchair to help me get around steep hills. As a bonus, this meant I could get out and about by myself and go further.

Fiona CollageWhat do you like to do to stay active and what type of exercises work for you to stay strong? Strengthening the core seems to be the key to using every part of your body from standing, lifting/reaching and even talking. It amazes me how muscles you don't even associate with actions give limbs strength. When I exercise my therapist often has to tell me what muscles I should be picturing using.

When FA gets you down, what do you think/do to feel better? I like to get out of the moment when the difficult stuff gets to me. And what helps me do that is very loud (sometimes quite emotive) music to sing along or move to; watching or reading stories (usually comedy, action or fantasy/sci-fi); and making plans for things to do.

What is one way living with FA has POSITIVELY affected your life? FA has had a somewhat positive effect on my perception and that of the people in my life, about the world and disability, and an empathy with other minority groups. My FA has also given me the motivation to try things, to do what I can do while I
can still do it. Something as small as a hair change, to traveling, to volunteering at the 2000 Olympic Games, to going on international student exchange.

What is a favorite motivational quote of yours? I'm not really much of a quote person. I prefer motivational songs, particularly ones with a good beat - it's easier to move if I'm thinking of a song. "Tubthumping" by Chumbawumba, so many songs by P!nk, too many to list here.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Exercise and try not to put off what you can do now. Your life will be different, not over.

What is the first thing you want to do when a cure/treatment to FA is found? I don't know. It's funny because curing FA would be fantastic no doubt. However, I've lived with the diagnosis and symptoms for two-thirds of my life. I guess the first thing I'd do is work at changing my mindset.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? Doctor Who quote - "The way I see it, every life is a pile of good things and... bad things. The good things don't always soften the bad things, but vice versa, the bad things don't necessarily spoil the good things or make them unimportant."

Stephanie Ambassador Signature

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Kyle Bryant

Kyle BryantKyle Bryant is the founder and director of the bicycle ride fundraiser, rideATAXIA for FARA. rideATAXIA currently has 6 locations and has raised over $7 million for FA research since 2007. Despite his diagnosis of FA at the age of 17, Kyle has completed numerous long-distance bike rides including "The World's Toughest Bike Race" - Race Across America in 2010 as part of 4 man Team FARA.

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Nick Lee

Nick Lee 4Name: Nick Lee

Age: 28 (born in 1990)

Where do you call home? Alabama

Work: Cashier at Lowes Hardware Store

What is your relationship status? Married June 2018

What's a typical day for you? I work Monday, Wednesday, Friday and every other weekend, then I stay at home and relax and spend time with my family and friends.

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Teen Hangout - February 2019

February Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). 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 hangout will be led by teen Kate Walker.

The theme: Fitness and ataxia. What motivates you? What do you do? Do you want to learn what others do? It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

Read more: Teen Hangout - February 2019

Nicole Kramer

Nicole KramerName: Nicole Kramer

Age: 24

Where do you call home? Chicagoland suburbs

Education: Bachelor's Degree in Sociology, Certificate in Criminology, and Associate's of Science

What is your relationship status? Who do you live with? Not in a relationship and not currently looking. I live with my mom right now.

What's a typical day for you? I work right now. Some days I start at 5:30 am or as late as 9 am. Each day is different. When it is nicer weather I take my service dog for a 2 or 3-mile walk as often as possible.

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