1. Tell us a little bit about yourself
I am 25 years old and live in upstate New York. I went to school at Cornell University where I studied Information Science. After graduating in 2017, I got a job as an administrative assistant in the Information Science department at Cornell. At work I help to schedule events and classes, assist professors with the logistics of classes and provide support to Directors within the Information Sciences department.
Along with my work at Cornell, I also volunteer as the IT person for Cure Rare Disease. I help with sending the newsletters and managing the other IT needs of the organization. In my spare time, I extensively game on the computer that I built. I enjoy first-person shooter games like Arma.
2. What led you to pursuing the career you have today?
Growing up in a small town, there were very limited opportunities to go do fun things. My brother and I played a lot of Star Wars and I found that I really enjoyed technology and computers to make everyday life easier. I built my first computer at 8 years old and then several more computers years later. While I went through elementary and high school I learned more about what could be done with computers via YouTube and the internet. While I was growing up the internet became a big deal and by the time I was in college I knew that I wanted to study information science to further my knowledge.
3. How did your diagnosis impact that outlook?
Muscular dystrophy has always been a part of my life. I remember going to many doctors when I was younger in places like New York, Philadelphia and Washington DC. It’s something that I have to deal with but isn’t something that’s stopped me from graduating from high school and college. For a long time, there was no opportunity to take part in a clinical trial and I’d sort of given up hope that there was anything coming. With the work that Cure Rare Disease is doing, I have renewed hope that there will be something to help me soon.
4. What challenges have you encountered along the way/presently in your career due to your rare disease?
Some of the biggest challenges I’ve encountered have been navigating new places that are not handicap accessible and also the struggle of seemingly endless medications, stretches and doctor appointments. It gets really tiring after awhile with the routine and it’s hard to go to new places because of the amount of planning required. With COVID, it’s especially difficult now because the places I did go before, like work and out to dinner, aren’t available anymore so it feels like the world is much more limited. I’m excited for when I can go out again without the fear of COVID.
My work is very accessible and the people I work with are very welcoming. I like the community that I’m a part of at Cornell. With minor adaptations I’m able to fully participate. Before COVID, my dad drove me to work in the morning and then picked me up in the afternoon. He stayed in Ithaca (where Cornell is) while I worked so that if I needed more help, there was someone there.
5. How have you overcome these challenges?
A lot of what goes into overcoming challenges with mobility involves planning ahead. Knowing where we are going, what we will encounter and having a routine. My family is there to help me with challenges as they come up and I’m trying to be more of an advocate for myself and to speak up. In college, challenges with inaccessible classrooms were solved by meeting with the administration and in some cases pressuring them to make the classrooms or class handouts more accessible. Very few people understand the challenges that people with limited mobility face – even a single step can be a big problem.
6. What advice would you give to others diagnosed with a rare disease?
I think everything depends on a person’s outlook in life. If you have a positive outlook, you can do almost anything. And so my advice is don’t look at a disability as something that is an end all be all. Yes it’s terrible disease but it won’t stop you from being the next Bill Gates or Mark Zuckerberg. Society is more accessible than it’s ever been and it’s important to follow your passions. I’m grateful that my passion is computers since it doesn’t rely as much on physical ability as much as mental ability. The other piece of advice is advocate for yourself. Doctors and others can sometimes think they know it all and are just there to tell you what to do. The perspective of the person living with the disease is very important and should be included in all aspects of care.