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FARAFARA Cure FA

John Ryan

Name: John Ryan

Age: 26

Where do you call home? Coastal New Jersey

Relationship status? Single

Occupation/Employment: Unemployed at present/worked at MDA in the past

Education: Bachelor degree in Criminal Justice

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed 16 years ago at age 10. I saw a neurologist at the Children's Hospital of Philadelphia.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No.

Describe your transition from walking to walker/wheelchair. I was diagnosed with FA when I was 10 and did my best to walk without assistance until I was 13 years old. Shortly there after I started using a walker and about three years later I was forced to start using a wheelchair.

What do you like to do to stay active and what type of exercises do you do to stay strong? I go to PT once a week and work out at the gym with a trainer three times a week. I do a lot of shoulder and lower and upper body exercises and a lot of stretching.

Do you use any tech aides? No.

What's your most comfortable pair of shoes to wear? I only wear sneakers. Sometimes I wear heating booties to keep my feet warm.

Do you have a diet plan you like to follow, and why? I eat a low gluten and low sugar diet to stay in shape and keep my weight at a healthy level. It helps me to perform better at the gym and physical therapy.

imageDo you participate in any adaptive sports or recreational activities? No.

What is one way living with FA has POSITIVELY affected your life? I have met lots of people I would not have met if I never had FA.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Start right away to exercise and eat right to maintain your strength as long as possible. And never say never.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? If there is a treatment that can make me more independent I would like to go back to school and further my education.

"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? This statement means strength and determination. Keep on keepin’ on. Don’t worry about what anyone thinks and just be yourself.


We are stronger together! Find a new "Meet the Community" interview every Monday. Lauren

 


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: info@cureFA.org.

 

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