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FARAFARA Cure FA

Danny Tanchez

Name: Daniel Tanchez (but really I prefer Danny)

Age: 19 (a little note: Danny was 18 when he completed this interview a couple weeks ago...Happy, Happy Birthday, Danny!)

Where do you call home? Fort Lauderdale in Sunny South Florida.

Relationship Status: I am single.

Education: I am currently a student at Johns Hopkins University, double majoring in Economics and Chemical & Biomolecular Engineering with a concentration in interfaces and nanotechnology and a minor in the History of Science & Technology. (If you didn’t guess by now, I like math and science)

Employment: I am currently a student and a research assistant in a laboratory that focuses on nanotechnology, specifically using colloids within the body.

How long have you been living (or known you are living) with Friedreich's Ataxia? I experienced balance problems beginning in my sophomore year of high school. I only noticed because I twisted my ankle when I fell down some stairs, so my dad took me to my pediatrician who said I might just be ‘getting used to being taller’ or just clumsy. The tripping and stumbling progressed so I went to see a pediatric neurologist who ordered an MRI and electromyelogram, but still found nothing. During my junior year, with some more mental concentration, the tripping incidents fell so we left it at that. However, in senior year, my gait was noticeably different and I was uncoordinated, so I saw another neurologist. He diagnosed me with ataxia and referred me to a movement disorder specialist. That is how I met Dr. Henry Moore of the University of Miami who recommended getting tested for FA after our first meeting. On July 29, two weeks before I left for Johns Hopkins, I received the official diagnosis: I have Friedreich’s Ataxia.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No family history, as far as my family knows, I am the first.

Describe your transition from walking to walker/wheelchair. Not yet, maybe ask in a few years. What do you like to do to stay active and what type of exercises do you do to stay strong? It’s a little harder now with my coursework, but I try to go to the gym for 2 hours one or two days per week. Stretching out my legs and lifting weights to build up muscle helps me the most.

What's your most comfortable pair of shoes to wear? Nike Air running shoes. I don’t know why, but I tend to walk better in them.

Do you use any tech aides? No.

Is there a diet plan you like to follow? Eat everything and anything that tastes good.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? It makes me appreciate things, especially the small triumphs I have everyday. Walking up a hill to class may take a lot out of me, but I feel as though I won a major battle each time. Large scale, that appreciation helps me to not over worry and stress out over things (insanely useful in college) and FA makes me focus harder. The easy things my friends do may not be so easy for me, but that doesn’t mean I can’t do them, it just means I have to concentrate a little harder and work a little more.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Friedreich’s Ataxia is a disease that will alter your lifestyle, but as of yet there is no cure. So being told I have FA is like telling me my eyes are brown. It doesn't change who you are or what you want to do, life keeps going. Adapt to keep yourself healthy, but don’t think of it as a drastic change in your life. FA is just what makes you different from others, not worse, but different. You can choose how to define that difference. What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? When that cure is found, I’d like to dance with one of my closest friends again.

"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? That statement defines a positive mindset to me. Yes, I have Friedreich’s Ataxia but I am more than that. FA does not define me, but motivates me. FA means I have to work harder, push a little more than the other guy. I am not going to complain about it, but I’m going to be just as good, if not better, than the other guy. At the end of the day, I want people to see me for my success, not see me as having FA.


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

 


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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