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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!


Rachel Manring

RachelManring1Name: Rachel Manring

Age: 25

Where do you call home? I call Pittsboro, NC my home because I grew up there. I currently live in Durham, NC because my FA symptoms have progressed significantly so I live with my husband and his parents so I can get more help.

Education: I have a high school diploma but walking through high school became difficult and almost impossible halfway through my freshman year. At that point I was too embarrassed to use a wheelchair or a walker so I finished high school online. After that, I completed a few online certification courses in early childhood development, child psychology and similar subjects.

By having FA and working in childcare, I can teach children acceptance of others with disabilities, which I believe is an important lesson to learn at a young age.

What is your relationship status? Do you have children? Who do you live with? On April 7th, 2014, I got married to a wonderful, understanding, helpful, and kind man. His name is Harrison Hill. He is always understanding and willing to help. We live on the third floor of his parents house (with our 11 dogs). Harrison carries me up and down the stairs. He helps me in the bathroom, in the shower and he even shaves my legs. We do not have children but I would really love to one day. 

Anna Morrow

AnnaMorrow1Name: Anna Morrow

Age: 11

Where do you call home? Baltimore, MD

Education: 6th Grade

Who do you live with? I live with my parents, sister Maggie, brothers Patrick and Sam, and dogs Libby and Delta.

What's a typical day for you? I get up get ready and go to school, I get home do my homework. After my school work is done, I have some free time so I will play with my siblings and/or ride my trike around the neighborhood.

How long have you known you are living with FA? I was diagnosed in June of 2015, when I was nine years old.

Are there any others with FA in your family? NO

What do you like to do to stay active and what type of exercises work for you to stay strong? I work out twice a week doing strength training and core exercises at a fitness studio in my neighborhood. I also love to ride my trike a lot.

Do you have any hobbies or special interests? I am a big Ravens fan. I also like to ride bikes and my trike with my family.

When FA gets you down, what do you think/do to feel better? I think of all my friends with FA and know that their going through this too and I’m not alone.

Tell us a little more about you. I love football and when I grow up I would like to work at the NFL. I also would like to travel to all of the rideATAXIA events. 

Amy LaPorte

AmyLaPorte1Name: Amy LaPorte

Age: 38

Where do you call home? Omaha, Nebraska

Education (degree(s): I didn’t finish college. The doctor who diagnosed me told me to stay home and enjoy my baby with whatever time I had.

What is your relationship status? Do you have children? I am married with four children (20, 18, 15, and 12).

What's a typical day for you? “Typical” is a word not often used since my diagnosis of Friedreich Ataxia (FA). Normally, I wake up with my husband, and he wakes our two youngest boys After he leaves for work, my mom comes to our house daily, she helps me prepare for the day,. She takes the boys to school, then comes back to our house and takes me to the gym. I go to the gym five days a week for approximately two hours. After the gym, I run errands if necessary and go back home for lunch. Following lunch, I enjoy reading or watching TV - my leisure time! My boys come home from school mid-afternoon. I make dinner (often with my kids help). My husband comes home from work late afternoon, and we enjoy our time together until we call it a day.

How long have you known you are living with FA? I was officially diagnosed when I was 20, but knew there was something wrong around 16. I am 38 years old now.

Are there any others with FA in your family? I had never heard of FA before my diagnosis. 

Megan Rush

MeganRush 1Name: Megan Rush

Age: 33

Where do you call home? North Baltimore, Ohio

Education (degree(s)): Bachelor’s of Science in Health Information Management

How will FA add to your future [career]? I currently work at a Durable Medical Equipment place. I have had many opportunities to share my own experience using certain items. People seem to appreciate my view on things.

What is your relationship status? Married for 4 years.

Do you have children? 2 - a boy(2) and a girl(8).

What's a typical day for you? I wake up at 6 and get my kids ready for the day, I drop my son off at the babysitter’s house and my daughter at school. I then go to work from 8-5 or 5:30. I come home, figure out dinner and get the kids ready for bed (unless there are sports)…that’s it. I work part-time for now so it’s only 3 days a week. My off days, I stay at home with the baby. Sometimes I run errands and sometimes not.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 18. I was a senior in high school. Before that, I was very athletic, (track and volleyball mainly). I was picked on because of the way I ran, I was clumsy, I started having migraines and I went to neurologist. While I was there, I asked him about my walking and the tests began. 

Sam Bode

SamBode1Name: Sam Bode

Age: 31

Where do you call home? North Branford, CT

Education: I have a bachelor of science in communications with a specialization in video production.

What is your relationship status? I am a single transgender male. I live at home with my sister, Alex and mom. We have learned how to live together as three respectful adults. A lot of people seem to think there is something wrong with living at home with my family, but our house is always fun with people around at all times of the day.

What's a typical day for you? A typical day for me would be to get up early and get ready for work. I work in my old high school as an administrative assistant. I am responsible for directing people who visit the school, as well as some security (no I don’t carry a gun, which is not advised for someone with FA:). I also mentor some of the students and help out teachers. After work every day I have someone work out with me.

How long have you known you are living with FA? I was diagnosed when I was 8 years old, on April 13, 1995.

Are there any others with FA in your family? Yes, my younger sister Alex has FA. 

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