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FARAFARA Cure FA

Conal Alexander

Name: Conal Alexander
 
Age: 35
 
Where do you call home? Christchurch, New Zealand
 
Education (degree(s): I have studied computer aided design at the local polytechnic and have two diplomas. I do not work.
 
What is your relationship status? Do you have children? Who do you live with? I am single with no children. I live with my brother (also with FA).
 
What's a typical day for you? My support worker arrives early and  I have breakfast in bed, then I rise and have a shower. My support worker leaves and then I take the dog for a run (I have a handcycle), then usually have a coffee with my parents. Then I have dinner while watching TV. I spend the evenings playing computer games until late.
 
How long have you known you are living with FA? (When and how were you diagnosed?) When I was eight my parents noticed I was walking on my toes. After many tests I was diagnosed the day before my ninth birthday.
 
Are there any others with FA in your family? My two older brothers were diagnosed with FA not long after me. 
 
Describe your transition from walking to walker/wheelchair. My walking was getting very bad by around 15, was just sliding around on the walls. I stuck with this until I got my chair at 17. Was using it full-time at 18.
 
What do you like to do to stay active and what type of exercises work for you to stay strong? When I was in my early 20's I got my handcycle (a front wheel which attaches to my wheelchair) and I never looked back. I use It nearly every day and incorporate many small hills, this keeps me fit and strong. I also stretch my legs every day.
 
Do you have any hobbies or special interests? I play computer games (mainly strategy and/or tactics, think chess but you also have to build an empire). I also enjoy taking the dog for runs/walks. And playing with my dog, Bob.
 
What is a good trick to make daily life easier?  I think stretching ones muscles makes things slightly easier.
 
When FA gets you down, what do you think/do to feel better? I like to have a smoke and a drink with old friends (or alone). Also escaping into a fantasy world via a book or computer game.
 
What is one way living with FA has POSITIVELY affected your life? Has made me mentally strong, more thoughtful towards others with disabilities and always thankful for the support I have.
 
What is a favorite motivational quote of yours? It's not so much motivational but I think it rings true with me, "You never know how strong you are until being strong is the only choice you have."
 
What is piece of advice that someone with FA has given you that encourages and inspires you? “Just concentrate on the possible.”
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Be strong, learn to adapt then come back and kickarse.
 
What is the first thing you want to do when a cure/treatment to FA is found? Probably walk up a large hill.
 
Tell us a little more about you…No more yet, wait for the book.
 
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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