Friedreich's Ataxia Research Alliance

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!

Linda Johnson

LindaJohnson1 Name: Linda Johnson

Age: 53

Where do you call home? Cazenovia, NY (Central New York)

Education (degree(s): BS Industrial Engineering

What is your relationship status? Do you have children? I am a wife and mom of two kids, ages 21 and 18.

What's a typical day for you? (i.e. daily routine, employment, student, stay at home parent, etc…) A typical weekday for me includes exercising, showering, feeding the animals (dog, cat, rabbit, fish), mowing the lawn (unless it’s covered in snow!), cooking, laundry, sending a care package to the kids, organizing/cleaning (I think I’m a little OCD!) … typical stay at home stuff! There is no typical weekend for me … traveling, dinner with friends, company over, etc. … it’s all good! Whether it’s a weekday or weekend, there is always time for a 25-minute nap followed by a cup of coffee! :)

Rachel Conger

RachelConger1 Name: Rachel Conger

Age: 19

Where do you call home? Wilmington, Ohio

Education (degree(s): I graduated from Wilmington High School in 2014. I'll be starting art classes soon.

What is your relationship status? I'm happily engaged to my love, Eric. April 30th 2016 is the big day!

What's a typical day for you? Wake up and do what needs to be done.

Dillon Head

DillonHead1 Name: Dillon M. Head

Age: 19 almost 20 (December 19)

Where do you call home? This is difficult because my parents are divorced and I’m close with all of my family members. However, I live with my mom and my stepdad. We are currently in the process of selling and moving to a home that was built handicapped accessible. It is all one level and is a bigger house and will be easier to get around because it doesn’t have stairs. I live in New York but I have family and friends who I count to be family; so I have to say my home is the world!

Education (degree(s): I graduated high school in 2014, which feels like forever ago already. I went to a small town school, which had 250 students from Pre-K to 12. Brookfield Central School is where I have my roots planted, but my tree is still growing. My future goals are honestly possibly never going to be easy to stick to just one thing. I have what they call: Peter Pan Syndrome, which has been a blessing. I’m currently enrolled in the New York Institution of Photography, which is all online. It has been great and I have been learning a lot more. Photography is one of my passions and will always be one with or without FA. One of my other goals is to get a degree in some sort of education. I love kids, but elementary school is not my calling. Teaching 7-12 or even higher education is more what I’m leaning toward. In January, I will be going back to college in Syracuse, New York; SUNY Onondaga Community College. It has not been easy, but I will do it and encourage anyone else with FA to go, if you're able to. When it comes to FA, it can add stress, depression and frustration to anyone on a “good day”. However, I don’t want it to “take over my life” anymore and I’m done having that feeling. It’s easy to get, especially if you just stop pushing and giving up. YES! FA is not easy to deal with for anyone, but I have come to realize that it can’t control me or my future. I have gained a lot more HOPE over the past 6 months then I have had the past year!

Erin Kiernan

ErinKiernan1 Name: Erin Kiernan

Age: 26

Where do you call home? I live west of Baltimore, Maryland.

Education (degree(s): Received my BA in Political Science at Edinboro University of Pennsylvania in May of 2012 and am still actively seeking employment.

What is your relationship status? Do you have children? Who do you live with? I am in a loving relationship with a wonderful, TAB (temporarily able-bodied) man. We really want children, especially me, but we are waiting a few years for the time to be right, financially. Our home is within my parents’ basement apartment due to finances right now.

What's a typical day for you? I am currently unemployed, but I am actively seeking job opportunities as well as trying to get interviews done. As for now, I have an aide come to assist me twice a day Monday through Friday with various activities of daily living. We perform professional work as well as having fun in the community.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed for 19 years. Technically, I was one of the first people in the state of Maryland to be diagnosed with Friedreich’s Ataxia with the blood test. On October 7th, 1996 by Kennedy Krieger hospital in Baltimore, Maryland. I am still seen by the neurologist, who helped me through the year or so of testing, at Johns Hopkins.

Billie Wells

BillieWells1 Name: Billie Wells (JoJo)

Age: 26

Where do you call home? Farmington, Michigan

Education: I would like to be a physiologist, FA has humbled my life and opened my mind and made me less judgmental.

What's a typical day for you? A typical day for me is school or doctors appointments, physical therapy. Riding my Catrike has become a major part of my life.

How long have you known you are living with FA? I was diagnosed at age twelve.