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FARAFARA Cure FA

Chelsea Chamberlain

Name: Chelsea Chamberlain

Age: 31

Where do you call home? Tempe, Arizona

Education (degree(s): I have a BA in Communications from Arizona State University (ASU) and a Masters in Strategic Public Relations from George Washington University

What are your living arrangements? I live with my baby, Molly in my house I bought in 2009.  (Molly is y 6yr old, 80lb, black lab!)

What's a typical day for you? Monday – Friday, I wake up, get ready and drive to work; after work I either go to the gym, yoga, or come home. On the weekends I hang out with friends, go out, shopping, reading … just depends.  I am a Program Manager for the President’s Office at ASU, where I run two programs – I also manage the internal PR for the CEO of ASU Foundation. Needless to say, my work keeps me insanely busy – on average I work a 50hr work week … but I love it!


How long have you known you are living with FA? (When and how were you diagnosed?) When I was 12 my parents took me to a neurologist, my dad had noticed I would stumble and was concerned since he watched his two nieces’ progress with FA. This was right before they had genetic testing so I was confirmed with the muscle and shock tests. Then a few weeks shy of my 13th, I was genetically confirmed.

Are there any others with FA in your family? I had two paternal cousins with FA, whom I never met, but they passed away over 30yrs ago. Two of my three sisters are FA gene carriers.

Describe your transition from walking to walker/wheelchair. At the time I transitioned to full-time wheelchair use, it was needed so I felt fine about it (I mean it still massively sucked, but I made the decision as to when and how, and that is crucial). I am the type of person that I will do things when I am good and ready, and not a moment sooner. When I was 15 my parents wanted me to use a wheelchair, to which I said ‘absolutely not’ – their concern was that I might fall and break my leg, to which I said well if I break my leg I’ll be in a wheelchair so let’s wait for that to happen. Luckily it never did and I walked at my HS graduation and first year of college.

I am perfectly capable of making my own decisions and as scary as it might be for my loved ones, it’s my life. I’ve made the calls my whole life – when to stop walking, when to get a hand-brake for my car, when to get a WC lift for my car, when to buy a house, etc. We can’t control a lot about FA, but we can control how we let it impact us.


What do you like to do to stay active and what type of exercises work for you to stay strong? I use a manual so I keep active that way, I go to the gym, and I practice Bikram Yoga … it’s so hot I feel as though I cheat death every time.

Do you have any hobbies or special interests? I go to Disneyland every year!

When FA gets you down, what do you think/do to feel better? I allow myself a 30 sec pity party and then I move on. There is no point in dwelling. Plus I know all that I have and have accomplished so it’s easy to tell myself to ‘suck it up.’

What is a favorite motivational quote of yours? “Regret doing something instead of not doing something” To truly live – FA or no – you always have to be willing to try; you may fail, but at least you tried.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? “The only guarantee in life is death.” This sounds morbid, but try not to look at it that way. Nothing else is set in stone, so until death, we have a blank canvas – we can make our lives the way we want. You have to want it enough to fight; it’s not always easy but the point is it can happen. Nothing is guaranteed but death.

What is the first thing you want to do when a cure/treatment to FA is found? I have intentionally created a life in which there is minimum FA acknowledgement. A cure will only physically affect my life: no ramps, no WCs, no lifts … but nothing about me or my life will be different. I will, however, audition for The Amazing Race with my best friend!

 "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? FA may affect my transportation but it has nothing to do with who I am. I have a life that does not acknowledge FA, short of the physical impacts, and I wouldn’t have it any other way.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

 

 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are 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.
 
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.

 

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