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FARAFARA Cure FA

Matthew Di Iorio

Name: Matthew J. Di Iorio

Age: 33

Where do you call home? Johnston, Rhode Island

Education: I received a Bachelor of Science in Buisness Administration in 2004 from Bryant College.

How long have you been living (or known you are living) with Friedreich's Ataxia? 20 years, August 4, 1994. I was diagnosed in Rhode Island by Dr. Karen Kerman, then she sent me to Boston for a second opinion.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My maternal grandfather had Parkinson's-isms. His neurologist claimed he did not have Parkinson's disease.

Describe your transition from walking to walker/wheelchair. I went from walking, straight to a wheelchair when I was 17. Looking back, I should have tried to use a walker. I want to encourage other FA patients to use a walker or another walking aide, instead of going straight into a wheelchair.

What do you like to do to stay active and what type of exercises do you do to stay strong? I like to go to dinner with friends and listen to bands. I enjoy Fantasy Football in the fall and working with my dog and a special dog trainer. I go to physical therapy, hand therapy, work out on my weight machine, and stand in my stander wheelchair. I do many arm strengthening exercises and hand exercises. Also, another way in which I stay active has been playing an active role in planning and running the Race for Matt and Grace to raise awareness and funds for FARA. In four years we have raised close to $100,000! What's your most comfortable pair of shoes to wear? Sneakers

Do you have a diet plan you like to follow, and why? I have a relaxed diet plan which includes counting carbohydrates because I am an insulin dependent diabetic. I follow it because following it helps me to maintain a stable blood sugar.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? The absolute most positive thing living with FA is meeting the wonderful FAers and their families over the years and also being closely involved with FARA.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Try to use a walker before you transition to a wheelchair. Get involved with FARA and other FAers!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? I would love to play hockey as a goalie.

"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? I have lived away at college, traveled all over the country, attended dozens of professional sporting events, met many famous athletes and recording stars, won many awards in high school and college, joined a fraternity, and attended as many FARA fund-raising events as humanly possible. I have FA, but FA doesn't have me!

Jean's note: Matt is an amazing uplifting person. One of the awards he won in high school is for smiling the most. His family & friends are as awesome as he is! I hope you get to meet him in person too.


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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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