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FARAFARA Cure FA

D. Elizabeth Haubert

Name: D. Elizabeth Haubert

Age: 31

Where do you call home? Philadelphia, Pennsylvania

Occupation/Employment: I'm a disability rights lawyer.

How long have you been living (or known you are living) with Friedreich's Ataxia? In high school, I just thought I was kind of clumsy. I was diagnosed when I was 19.

Describe your transition from walking to walker/wheelchair. Beginning to use a wheelchair was really a watershed thing for me. I thought I would just use it for distances, but I quickly realized how freeing it was to be able to get around without worrying about trying to keep my balance. Trying to get around the city in a chair, I realized just how common physical barriers to access are, leading me to my profession and passion in disability rights.

What do you like to do to stay active and what type of exercises do you do to stay strong? I used to be very active in adaptive sports, and wish I could find the time to do so now, as it is so much fun and great exercise. Now, I ride my trike when I can and stretch at home.

Do you use any tech aides? if so, what works or hasn't worked for you? My iPad was really helpful to me in law school. With electronic versions of my textbooks, I didn't have to carry around 20 pounds of books, and I could highlight electronically (no more wavy neon lines covering my textbook pages!) and type margin notes. I still use it a lot for work.

What's your most comfortable pair of shoes to wear? In cold weather I love THESE boots. Easy to get on (and no need to tie) thanks to the zipper.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? FA led me to discover a passion for disability rights work, and a community of disabled friends who my life would not be complete without.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Find the little things that make your world more accessible to you and embrace them; they will make life so much better. For instance, in this picture, you can see at least 3 of my favorite home accessibility tricks- suction handle on the fridge door to make it easier to open, fold-out mirror mounted above the stove so I can see what's in a pot or pan, and electric wine bottle opener (in its charging station to the right of the stove).

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? A cure for FA is actually not the be-all, end-all for me. Being cured can be one aspect of thinking about my future and the future of others with FA. It's also vitally important to think about the ways to help people with FA live our lives to the fullest through things such as accessible housing, transportation, employment, and social activities. So often the lack of disability access in the social environment is a main barrier preventing many disabled people from participating in society. Dealing with FA symptoms can definitely be tough, but when we have equal opportunities to access the world, we are better able to deal with FA's challenges.

"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? The adversity I face is largely due to society not valuing disability and disabled people - not due to anything that might be considered "wrong" with me. I embrace my life and my body, disability being an important part of both, and focus on fighting what's wrong with society, instead.


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

 


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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