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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Alena and Alisa Wolfson

Name: Alena Wolfson
 
Age: 18 years old
 
Where do you call home? I live in Glendale AZ
 
Are there any others with FA in your family? My younger sister, Alisa. (read Alisa's interview below)
 
Describe your transition from walking to walker/wheelchair. It was very sudden. I got sick with a respiratory virus, then when I got better I wasn’t able to walk anymore. 

Erin Pieper

Name: Erin Pieper 
 
Age: 27
 
Where do you call home? St. Louis, Missouri 
 
Education (degree(s): Bachelor of Arts in Psychology and Sociology 
 
What is your relationship status? Do you have children? I'm a single Mom to the sweetest three year old boy, Eli! The best way to describe my living situation is by saying I have two homes. I live alone in a house that I stay at when Eli goes to his Dad's. It's a small slab home (no stairs) which is very easy for me to maneuver around in. When Eli is with me, we've been staying at my parents just for that little extra help I may need. Hopefully, within the next six months I can start transitioning Eli back to my house. He knows my do's and don'ts; what I can and can't do and helps me out without me even having to ask! 

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.

Dave Arnold

“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch
 
My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently. 

Crystal

Name: Crystal 
 
Age: 36
 
Where do you call home? St. Louis, MO
 
Education (degree(s):  Just graduated (last weekend) with an Associate of Arts in Teaching
 
What is your relationship status? Do you have children? I have been married for 16 years and have a 10 year old son.
 
What's a typical day for you? My typical day will be changing. For the last 3 years I have been in school, so my days have consisted of school, homework, housework, and taking my son to his extracurricular activities (baseball, martial arts, gymnastics, cub scouts, and anything else he has decided to try over the years). Since January of this year, I have been going to the gym 3 days per week.
 
Since I am not in school anymore, I am trying to catch up on my house work, since I have not done as much as I would have liked in recent years. I go to the gym 3 days a week. This takes up half of my day because the gym is 45 minutes away one way and my workout is 90 minutes. Also, my son is in cub scouts and my husband is leader and I am assistant leader. Planning activities for our den and also assisting our cubmaster is very time consuming. Now that I am out of school I can devote more time to planning events for our scouts.  I also hope to relax more and read books for fun again (I have not done much leisure reading since I started  college).

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