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FARAFARA Cure FA

Jake Hayner

JakeHayner1Name: Jake Hayner

Age: 34

Where do you call home? Onaway Michigan

Education (degree(s): Some college

What is your relationship status? Single

What's a typical day for you? Parents get me up, help me dress, prepare meals, help with daily needs. I have a personal assistant that takes me to physical therapy. On the days I don't go, I have a workout routine I do at home. I may sit in my hot tub, visit my sister next door, and sit in the sun. I stand up in my stand up chair and listen to music. I watch a little tv, play a little PS-4, an maybe go for a ride with my mom.

How long have you known you are living with FA? About 17 years.

Are there any others with FA in your family? My older sister also has FA. She is 36 and lives next door.

Describe your transition from walking to walker/wheelchair. It was a very hard transition. I started to fall a lot, twisting and hurting my legs and knees. My parents rearranged the furniture so I had furniture to hold on to. They put up bars along the walls to assist me. I fought the wheelchair as long as I could, until I could no longer get around without it. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I move as much as I can, I do weights, use stretch bands and wall pulleys, I stand up in my stand up chair, exercise in the pool, and go to the gym whenever I can.

Do you have any hobbies or special interests? I love sports, going to the movies, fishing and working out.

What is a good trick to make daily life easier? Exercise. I always feel better.

When FA gets you down, what do you think/do to feel better? Whine to my mom, get out of the house, or exercise.

What is one way living with FA has POSITIVELY affected your life? I have met some awesome people with FA, developed some great friendships. There is nothing positive about FA.

What is a favorite motivational quote of yours? "Gotta have faith". I have it tattooed on me.

What is piece of advice that someone with FA has given you that encourages and inspires you? Live life to the fullest. Make every day an adventure.

What is the first thing you want to do when a cure/treatment to FA is found? Play basketball. Oh, how I miss it.

"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 am still me. I still long for the same things you do. I try and live one day at a time.

We are STRONGER TOGETHER!Find a new Meet the Community interview every Monday.

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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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