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FARAFARA Cure FA

Jakob Mitterhauser

JakobM 3Name: Jakob Mitterhauser

Age: 24

Where do you call home? Vienna, Austria

Education (degree(s)? How will FA add to your future [career]? Bachelor of Science in Geography (2015) ; Starting my individual Master Urban Climatology and Urban Climate in October 2017. FA will not change my future career because I believe there will be a cure in 3-5 years and my progression is mild.

What is your relationship status? I am happy single. I live in my own flat in Vienna alone.

What's a typical day for you? Every day starts with meditation and balance exercises in the morning. This semester I am working on Monday/Thursday while going to University on Tuesday and Wednesday. Friday till Sunday is free and mostly used for fun with family and friends and time in nature. During the week I have physical therapy and mental training once and swimming twice.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed in Vienna in August 2011 after looking for a diagnosis for 6 months. I was 18. So, I have known it for 6 years. 

Are there any others with FA in your family? No. I have two siblings who luckily are not even carriers.

Describe an adaptation and/or transition you have had to take due to living with FA. I do not use a walker. My progression is very mild. I can still walk about 5 to 10 miles a day. Due to balance problems, I am about to make a new barrier-free shower in my flat.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do physical therapy once a week. I do my daily exercises in balance and coordination. Meditation and Yoga helps a lot. I am in a physical rehab center for 6 weeks in summer which stopped my progression. I swim twice a week from October-May. I like walking in nature and riding my bike.

JakobM 2Do you have any hobbies or special interests? I love traveling. When I received the diagnosis, I told myself to travel as long as I can. I have been one month each to Spain, Costa Rica, India, Canada/California, South America, US/Mexico and many towns in Europe. I call myself travel-addicted. It makes me stronger.

My interests are cultures and languages. I speak English, Spanish, French and my mother tongue German.

What is a good trick to make daily life easier? Mental training, Meditation and good friends/family who accept me as I am.

When FA gets you down, what do you think/do to feel better? Thinking about how good our lives in the western civilization is helps. We have peace, food, water and a house to sleep. What else?

What is one way living with FA has POSITIVELY affected your life? I have met lots of amazing people. I learned that you can be happy in life just with health and friends/family.

What is a favorite motivational quote of yours? Good Things come to those who wait. Life begins where fear ends.

What is piece of advice that someone with FA has given you that encourages and inspires you? Life is about how we react. I love the ted talk of Kyle Bryant.

JakobM 1What is the best advice YOU could give to a person who has been newly diagnosed with FA? Live in the present and accept your new lifestyle. Always think about what you can do and see how good your life is. You do not need to walk to have a happy life. Read inspirational books and start meditating.

What is the first thing you want to do when a cure/treatment to FA is found? I would like to make a big celebration party with my FAmily. Probably I would book a flight to New York and make a big party with FARA.

"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? For me that means that life is not just about FA. Do not let FA control your life. Be the one who rules. You are not FA. You are a great person who has a disease, a challenge that makes you stronger.

Tell us a little more about you…I opened up to the FA community in 2016 when I participated at the CHOP Symposium in October in Philadelphia. The first person with FA I talked to was Kyle Bryant. He inspired me a lot and I did the 25 mile bike ride at rideATAXIA Philly. In 2017, I participated at the first rideATAXIA Europe in France. I hope to help organizing the next ride in Europe in 2019. Working on it. ☺ FARA and the FA community have helped me to accept the disease and give me the feeling that I am not alone; which is pretty cool in a country of eight million people like Austria. I am building a community here which is difficult. Until today I found one other guy with FA here. I am a funny European full of motivation and joy. Life is great!

MattLafleur sig 16 mtc


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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