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FARAFARA Cure FA

Clifton Raspberry

CliftonRaspberry1Name: Clifton Raspberry

Age: 35

Where do you call home? Spring, TX

Education (degree(s)? High School. I was an equipment operator and truck driver.

What is your relationship status? Do you have children? No, I am not married, and have no children.

What's a typical day for you? My daily routine changes. Errands, chiropractor visits, maybe wrench on a truck, caregiver visits, seeing my girlfriend, and/or watching TV in the evenings are typical.

How long have you known you are living with FA? I was diagnosed in 2004. Started showing signs in 2001. 

Are there any others with FA in your family? No others. I am adopted.

Describe your transition from walking to walker/wheelchair and/or any other adaptation you have had to take due to living with FA. After nearly breaking my foot, I decided to use adaptive equipment, and use a walker. My additional adaptation has been learning to hold on to things when I walk. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to work on vehicles, go off-roading, and/or do yard work.

Do you have any hobbies or special interests? Yes… off-roading.

What is a good trick to make daily life easier? Cups with lids improve my life.

When FA gets you down, what do you think/do to feel better? That is hard. Gummy bears cheer me up.

CliftonRaspberry2What is one way living with FA has POSITIVELY affected your life? It has definitely given me a drive to keep moving no matter what.

What is a favorite motivational quote of yours? “Do not go gentle into that (good) night. Rage rage against the dying of the light.” -Dylan Thomas

What is piece of advice that someone with FA has given you that encourages and inspires you? I am inspired by seeing Kyle Bryant, and the awareness raised by FARA. I would love to help out.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? FA affects everyone differently, but the more you keep moving the less hold it has on you mentally and physically.

What is the first thing you want to do when a cure/treatment to FA is found? I want to take a road trip, and drive my truck to Alaska.

"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? It means this will not beat me. I have no desire to give up. If I fall, then I get back up.

Tell us a little more about you…I was a truck driver and operator since I was 18 years old; nothing I can’t drive. I love driving an off-roading. The slow crawling over rocks and mountains is fun; and who doesn't love to play in mud!

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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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