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FARAFARA Cure FA

Brooke Ziegler

imageName: Brooke Ziegler

Age: 26

Where do you call home? Wichita, Kansas

Relationship status? Do you have children? In a relationship.

Occupation/Employment: Stay at home dogmom/girlfriend, hehe. But really I seasonally work for a local business, I volunteer a lot and I am a consultant for Scentsy fragrance and Velata fondue.

Education: Bachelors of Arts in Strategic Communication Alma Mater: Wichita State University

How long have you been living (or known you are living) with Friedreich's Ataxia? Well, I was seven years old when my older brother, Clint, four years older, was diagnosed. I started showing signs around age 11. I received physical diagnosis at age 13 and finally, at 23, I was genetically tested. Do you have any known family history of Friedreich's Ataxia or similar symptoms? Just my brother.

Describe your transition from walking to walker/wheelchair. I made a decision in high school, for my safety, to use a manual chair more often. I was "using" friends/family for help and made a decision that it wasn't really worth the risk of pushing friends away.

What do you like to do to stay active and what type of exercises do you do to stay strong? I work out with a trainer twice a week. I try to swim at least once a week. To stay active, I love shopping, I am a big traveler, I do a lot of painting/art, I enjoy trying to cook, I spend a lot of time with my family and dog.

What's your most comfortable pair of shoes to wear? I have these grey fuzzy boots that are my definite go to!

Do you have a diet plan you like to follow, and why? I try to watch calories by cutting portions and eating healthy. I self transfer and need occasional assistance so I watch my weight for those reasons as well as other health risks. What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I have met so many people through FARA, MDA, and the disability community in general.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? My brother once told me, "People will stare so give them something to stare at." To me that means don't overthink being different - be proud to be unique.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Celebrate with EVERYONE for EVERYONE!

"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? My family reinforced the fact that I can do anything despite whatever life throws at me. As far as living life despite adversity, I imagine I have two choices; be depressed to the point that no one enjoys to be around me or I can be positive, outgoing and make smiles. I choose the second. imageNote from Andrea:For the first 15 years after I was diagnosed with FA, I though my brother and I were the only two people in Wichita (and possibly the state of Kansas!) with this condition. And then we met Brooke and Clint. Through them, we saw that it is possible to live a normal and happy life!


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

 


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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