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FARAFARA Cure FA

Alex Fielding

I am a native New-Englander – born, raised, and still proud to call the Ocean State (RI) my home. I’ve been afforded opportunities to travel nationally for work and internationally for pleasure, building memories with my family in places like Costa Rica, England, and South Africa. Despite my spark for adventure, I am more of a home-body; hiking/camping in the Spring, sailing in the Summer, apple picking in the Fall, and reading a good book by the fire in the Winter (as you can see I need all four seasons!). I enjoy nearly anything with family and close friends, especially cooking (and eating!), music, wrestling with our dogs and nearly anything outside. 
 
It may seem unbelievable, but I also enjoy my job! With a BS and MS in Chemical Engineering from Bucknell University, I joined a global materials manufacturing company. In four years I worked for three different divisions, in several job functions across two states – talk about busy! As a manufacturing-oriented engineer, I love solving problems and being able to work with my hands. Having a purpose every day, challenging my mind, and being driven by the constant pulse of operations is oddly therapeutic.
 
And I hit the 1/40,000 jackpot to get some extra DNA, that we all know as FA. Of my two younger brothers, younger sister, and nearly forty cousins, I was the first to introduce FA to our family. I can give you the emotional rollercoaster diagnosis story, living alone in Texas, abandoned by close friends, and traveling 3+ hrs one-way twice each week for the array of testing many of us have become familiar with. If you want details on that sob story, I’ll be happy to share with you, but it’s not who I am and not fit for my bio.
 
Since being diagnosed in November 2014, I’ve relocated back to RI to be closer to family and friends – I have a huge, loving family and a great group of caring friends. Being a primarily independent introvert my whole life, I’ve had a dramatic realization of the power of community to motivate and energize. The encouragement from everyone in my life afforded me a quick turn-around from denial and anger to acceptance and hope. 
 
And this is not blind hope! With my technical background, I’m familiar with the Pharma industry and up-to-date with all the relevant literature (journal papers, medical studies, and press releases). There are an overwhelming number of studies, trials, research investigations, etc. supporting a diverse approach to curing FA. This disease may be rare, but I think it is rarer to see so much scientific support on so many different fronts!
 
For me, it all boils down to attitude. I’ve looked at the same situation from negative and positive views – I’ve found the only difference to be stress and happiness. I can focus on the skills I’ve lost playing sports or the constant energy drain I face… OR, I can realize that my mind (personally my best asset), isn’t affected and I’m still driving forward every day at work and enjoying each moment with those I love. At this point in my life, FA is an asterisk on everything I’ve accomplished and the experiences that I enjoy. It won’t keep from achieving my goals, but it might alter the path I take to get there.  All I can do is adapt and enjoy the challenge – it makes success MUCH sweeter. And I’m learning that I don’t have to face this challenge alone. With family, friends, FAmily, and all the good-natured people in the world, we are unstoppable.
 
 

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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