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FARAFARA Cure FA

Don Royer

DonRoyer1Name: Don Royer

Age: 36

Where do you call home? Cape Cod, MA

Education (degree(s): B.S. Occupational Safety Studies. I worked in Field Safety for a construction company for about 12 years. Within the past year I have changed career paths to get me out of the construction world. I now have a job as a Human Resource Information Systems Manager. It’s a long title but, basically I work at a computer all day.

What is your relationship status? Do you have children? I am married and have 2 little girls (ages 5 and 1). 

How long have you known you are living with FA? (When and how were you diagnosed?) I was officially diagnosed about 12 years ago. I have had symptoms since I was 17 but, didn’t know what it was. I was kicked out of a bar when I was 23. They said I was drunk. I hadn’t even had a drink but, I was swaying. This was when I decided I needed to figure out what was wrong with me. I spent a few months trying to self-diagnose. I went to a few different doctors and ended up at a neurologist where she was able to diagnose even prior to the DNA test.

Are there any others with FA in your family? Nope, I’m the only lucky one in my family to have this!

DonRoyer2Describe your transition from walking to walker/wheelchair. I have been walking with the aid of a cane for several years and have just recently graduated to a wheelchair. I am still fairly ambulatory and do many things around the house on my feet.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to ride my recumbent but, don’t do it as often as I should. I have recently purchased a home gym.

Do you have any hobbies or special interest? I am an avid sports fan (anything BOSTON sports), I love spending time with my kids and working on home projects (I love carpentry type stuff)

What is a good trick to make daily life easier? I have taken off the foot rest of my wheelchair to allow my legs to help move my chair. This keeps them active as well as I find it easier to move me around.

When FA gets you down, what do you think/do to feel better? I believe that everybody is dealing with something. Whether it’s you, a family member or a friend. I know that I can handle anything that is thrown at me so, this is just another hurdle.

What is one way living with FA has POSITIVELY affected your life? Because of FA, I have been able to start a new career that has allowed me to work from home instead of traveling all of the time. This allows me to spend a lot more time with my family.

DonRoyer3What is a piece of advice that someone with FA has given you that encourages and inspires you? Erin O’Neil convinced me to come to her fundraiser and to get involved. I don’t have a lot of free time but, I do try to get out to see the FA community whenever possible.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don’t be afraid. There is a cure/treatment right around the corner.

What is the first thing you want to do when a cure/treatment to FA is found? I want to do anything sports related. I would probably play some basketball.

"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? FA does not define anything about me, its just something I have to deal with.

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

AlexFieldingmtcsignatureAlexFielding


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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