Name: Jude Lally

Age: 35

Where do you call home? Lexington, KY

Education (degree(s)): Bachelor Business Administration from University of Kentucky

What is your relationship status? Do you have children? I am single, and live alone. I do have a fur baby/guard dog named Jermaine.

What's a typical day for you? A typical day for me begins and ends with caregivers coming to my house. The A.M. assistant helps me get out of bed, and ready for the day. This person performs general dog maintenance, meal prep, house chores, and some exercise. In between caregivers, I work on a new book, fulfill computer activities/phone calls, or watch Netflix, The P.M assistant helps with more exercising, personal care, and sleep-ready activities.

How long have you known you are living with FA? My official diagnosis was in 1998, however, my family and I, knew something was wrong a few years prior. It has been 19 years diagnosed with FA.

Are there any others with FA in your family? No one in my family, except me, has FA.

Describe your transition from walking to walker/wheelchair with FA. I maintained walking until college. I transitioned to a scooter around campus, then 18 months later, a wheelchair. For me, it was a tough transition. Every transition I make, from equipment to home modifications reminds me of disease progression. To some degree, it’s always an emotional process. 

Name: 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. 

The FARA Ambassador Program is excited to announce the second Google hangout for teenagers with FA. It is an hour-long web-based hang out. If you don't have FA, you are not allowed to participate in the hangout. There will also be two or three adult FARA Ambassadors present. The adults will be there just to help keep the conversation safe and going. We have themes for discussion, but they are just to give us a framework we don’t have to talk about the theme. Hopefully it is a way for you to connect with other people experiencing similar if not the same things as you.

The theme this month will be: what are you grateful for in 2017 and what are you looking forward to in 2018?

When:  Thursday, December 21 @8-9PM ET for teens ages 13 to 19. (Please note: all the teens will be together this month, but we plan to host separate hangouts for young and older teens in the future.)

Where: On Google hangouts so if you have access to the Internet and speakers and a camera on your device you can come!

How: you need to get your parents or guardian to sign a consent form (click HERE). This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Additionally, they can get a consent form here if they need to. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout.

Please send us an email to either address if you have questions!

See you soon!

Name: 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.  Add a comment