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Jude Lally

JudeLally1Name: 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. 

What do you like to do to stay active and what type of exercises work for you to stay strong? My routine is spread throughout the day. I do, bed exercises/stretching, push-ups, trapeze pull-ups, and I use a standing frame.

JudeLally2Do you have any hobbies or special interests? I enjoy writing. It’s a way of explaining my journey with FA. I currently have two published volumes of poetry, and articles in “Generations”, a publication of the National Ataxia Foundation.

What is a good trick to make daily life easier? My trick to make life easier each day, stay busy.

When FA gets you down, what do you think/do to feel better? When FA gets me down, I feel better with a good cry, loving on my dog, taking deep breaths, refocusing my attention.

What is one way living with FA has POSITIVELY affected your life? FA has positively affected my life by making me a better listener and a more patient person.

What is a favorite motivational quote of yours? Anything worth doing is worth doing right, no matter how long it takes.

What is piece of advice that someone with FA has given you that encourages and inspire you? One year at FA Woodstock, Kyle Bryant and I were talking. In the course of the conversation, he said. “There is no such thing as too much exercise”. His observation has stuck with me.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Advice I‘d give to someone newly diagnosed with FA is stay in school; become as educated as you can until you find your calling. Accomplish as much as you can as young as you can because I is more difficult to develop new skills as you age.

What is the first thing you want to do when a cure/treatment to FA is found? If a cure were found today, I’d start polishing my resume.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? The statement, “I have FA but FA doesn’t have me”, is a statement of motivational defiance. I have same emotional, physical needs as everyone one else. Even though my tears are as salty as anyone, I must strive and accomplish. FA may not sway me into a different direction than were I want to go. Remain fearless.

Tell us a little more about you…I want to say to anyone, at any stage of progression… Don’t give up on things that bring happiness.

ChristinHaun mtc sig 16

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:


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