Meet the Community

Name: Katie Snead

Age: 19

Where do you call home? Vancouver, Washington

Education: I have an AA degree and am currently in school to get my Bachelors Degree in Psychology.

Who do you live with? I live with my parents and my sister.

How long have you known you are living with FA? I was diagnosed with FA when I was 9. When I was about 7, my parents began to notice that I had trouble with my balance and keeping up with physical activities compared to other kids my age. I received testing for a brain tumor and numerous other genetic diseases before being diagnosed with FA after 2 years of testing.

Describe your transition from walking to walker/wheelchair: I started struggling a lot with walking in my freshman year of high school; when I was 14, a few months into the school year, I was having a very hard time walking independently. A teacher and great friend of mine, Tim Dibble, started letting me lean on him for support as I walked between classes; he saw my commitment to walking and did everything he could to support my wishes! I then had to go down to half days at school as I became too exhausted to get through a full day. I started doing half days every other day, all to keep walking. I was coming home after just a few hours at school and collapsing onto my couch. My relationship with walking had become incredibly toxic. I began using a wheelchair in my sophomore year, when I was 15 and I was able to attend school every day – rebuilding my mental and physical health.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to use a standing frame, push my manual wheelchair around my college campus, and transfer independently as much as possible. These three things combined together daily help me keep my body moving and help me to maintain my strength.

When FA gets you down, what do you think/do to feel better? I honestly don’t have many “bad FA days.” I have days where I’m exhausted and emotional from the constant battle with my body in my day-to-day life. I just “get on with it” every day, I get up, care for myself, care for my dog, go to school, and treat myself with kindness every step of the way.

What is one way living with FA has POSITIVELY affected your life? In many ways, FA is the most positive thing in my life. I have traveled all over the country to participate in research studies, I’ve met amazing people, and I’ve gained such a unique perspective on life. I wouldn't have any of these things if I didn’t have FA, and I couldn't imagine that.

What is a favorite motivational quote of yours? Let life be what it is instead of what you think it should be.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Life will work out. You will always find a way to adapt to your circumstances. It’s okay to have to reevaluate things and live life differently than you expected to.

How do you live your life in the face of adversity? When you reach a point of accepting that you have FA, you will see life in the best way possible. The moment you realize that there is no one to blame for FA, it’s a random genetic sequence; you learn that things don’t need to be so incredibly heavy, you don’t need to harbor any anger, only acceptance and commitment to being grateful for all that you do have in this life!

Original MTC: https://www.curefa.org/meet-the-community/don-royer

Name: Don Royer

What do you want to discuss? My career path

When did you start this? I was laid off 1 week into COVID-19. Apparently, they found it easy to lay off the family man in a wheelchair with a life altering disability. Anyway, I have built a career worth of knowledge in the field of Occupational Safety and have always had an entrepreneur spirit. I knew no one was going to hire me in my condition. However, this wasn’t going to stop me. Beyond anything, I need to provide for my family. So, I decided in the heart of the pandemic, to start my own business. Yup, covid or not here I come…and BOOM! I started an occupational health and safety training and consulting business East Shore Safety. www.eastshoresafety.com.

Of course I don’t do any of the field work or the training anymore but I hire people to help with that. So, I’ve been in business for over 3 ½ years and have made it work! As my condition progresses, I have brought my wife into the company and hope to hire my daughters soon.

What made you choose this? I should say this from a position of power (and not vulnerability) but, I did not choose it. I had to do it to provide for my family and survive. I live in Cape Cod…it’s expensive! I went to college for safety and here I am still doing it, decades later. I love it, though!

Does FA impact this? Yes, FA certainly impacts everything within the business. I cannot do the things I would like to within the business. I am more tired than many of my contemporaries, I get hurt more often doing routine things but, it is what it is…

Interviewed by

Original MTC: https://www.curefa.org/meet-the-community/jakob-mitterhauser

Name: Jakob Mitterhauser

Please share any updates since your last interview. It has been 6 years since my last interview. I am still living in Vienna, finished studying and am working part time as an urban climatologist for the year. My workout routine has changed from physical therapy to intense training 4-5 times a week as I am part of the Austrian Para Rowing Team. Taking care of my health is still the main goal in my life.

What do you want to discuss? Travelling

When did you start travelling? 2012, 3 months after my FA diagnosis

What do you enjoy most about travelling? It’s the excitement of seeing new things, getting to know new countries, cultures, and people. I love speaking different languages, eating local food, and seeing beautiful landscapes.

Does FA impact this? Please share any adaptations you’ve made to be able to participate in travelling. Yes, definitely. It was way easier to travel 10 years ago. Back in 2014 in India, for example, my balance was better and I did some hiking and walking in the dark which would be more difficult these days. Nowadays I plan better, take more time to relax, do less activities, do shorter trips and care more about accessibility.

Tell us more?? Back in 2011, when I got my FA diagnosis, I was told that I’d need a wheelchair within 5-10 years. That motivated me to see the world. I’ve been to 32 countries, mostly in Europe, North America and South America. Speaking German, English and Spanish helped me a lot.

I started slowly 2012 in Spain, saw Costa Rica in 2013 and India and Canada and the US in 2014. Then I was “infected with the travel fever”. I did major trips every year for 2-5 weeks. I fell in love with South America in 2015 while hiking up Machu Pichu. It made me realize that I am way stronger than I thought and can push limits.

Then I started to incorporate FA into my travels. I traveled to the FARA Symposium in Philadelphia in 2016 and 2018, combining it with trips to Canada and Mexico. I traveled to Ride Ataxia Europe in France (2017), Germany (2019) and the Netherlands (2021). Right before the pandemic I did 5 weeks in Brazil and Peru and one week in New York and Washington at the Rare Disease Week.

Recently I’ve focused more on traveling in Europe, visiting Greece, Ireland and France, for example. Seeing new places gives me a lot of motivation to stay strong. One of my favorite things is to visit my FAmily all over the world. I’ve been invited to so many houses and every FAer is welcome in my apartment in Vienna.

Interviewed by: FARA Ambassador Scarlett Olivia Drews

Original MTC: https://www.curefa.org/meet-the-community/tiffany-rose-gambill

Name: Tiffany Rose Gambill

Please share any updates since your last interview. Hopefully you remember me, if not or if you were recently the lucky one to get diagnosed with FA, welcome, my name is Tiffany, I’m 32 or 33, when you hit 30 the years are whatever, except for milestones! I still live in Bridgewater Massachusetts with my parents, we built an accessible apartment!

Where do you work? I am still working 3 days a week with the same company. I fill tubes with freshly minted silver coins to be shipped out. I also help HR, right now I’m making an excel of Christmas gifts bought as the company's yearly toy drive, we buy for 80+ families. I am more of the office's ray of sunshine!

Are you in a relationship? Still single, but guys are too needy and dramatic. And I don’t want to marry a guy then in a few years my FA gets worse and they feel trapped, just personal.

How long have you known you are living with FA? Been living with diagnosed FA for 16 years.

Are there any others with FA in your family? I am the only family member with FA.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do have a trainer who I see once or twice a week, we work on upper body strength, and he kicks my butt. I also go to physical therapy 2x a week. I have a stander at home that I don’t use enough and I walk my dog in a scooter and do agility with her and my mom pushes me.

When FA gets you down, what do you think/do to feel better? [I think of] the Instagram reel where the husband asks when life gets you down, what do you think/do to feel better? And the wife answers that we search for flights.

What is a favorite motivational quote of yours? “Life is not always a matter of holding good cards, but sometimes, playing a poor hand well.” –Jack London

What is the best advice YOU could give to a person who has been newly diagnosed with FA? KEEP SINGING. When someone says you can’t, show them you can!

What is the first thing you want to do when a cure/treatment to FA is found? Stay tuned! My hope is that it improves my speech.

What is one way living with FA has POSITIVELY affected your life? So I travel a lot, all over the world. Last year in Alaska, my mom and sister told me again that I should document this for other wheelchair users. I kept thinking, so I started an Instagram and a TikTok under the same name, but I need tik tok lessons! Then when I was in Austria I bought my URL. Now typing is slow and hard, so I haven’t published many blogs yet, and it’s not on google yet! I need an IT man! I suffer from migraines which happen a lot and those days knock me off my butt. The blog is hard –– I type it up then my friend edits it. I have to hyperlink so much, upload pics and resize and organize them, include tags, then check it.

When did you start your Instagram? I started 6 months ago. My blog I am still starting, typing is hard.

What made you choose this? I love to travel, and I know with any type of disability travel is intimidating and scary; I want to show them the accessible things I did and show that traveling is possible.

Does FA impact this? Please share any adaptations you’ve made. My mom talks on the phone for me when booking a hotel, asking about the roll in shower and reserving transportation. I have a manual chair that hates cobblestones, sand, crushed rock or rough dirt, I got a third wheel that lifts my caster wheels which is what gets stuck a lot. A lot of times buildings aren’t accessible, for example, we went to Germany to a beautiful castle that wasn’t accessible, but I was fine with sitting outside and taking in the view, while my parents went inside and took photos for me, but I had the better view. I currently am in a manual chair, so they push me everywhere and I keep in mind how far they’ll walk. I also can’t transfer on my own, so I need to travel with someone.

Interviewed by