Unstoppable: How Nicholas ‘Nick’ Sinagra made incredible accomplishments despite having rare genetic disease that causes severe and progressive muscle weakness

Yitzi Weiner
May 4 · 6 min read

There are 10,000 things I wish people understood, but most importantly I wish people knew how many false stereotypes are still out there for people with disabilities. Some people automatically assume that if an individual has a physical disability, they must have a mental disability, when in reality — there’s nothing wrong with my mind, my disability is physical. I unfortunately don’t expect this stereotype to go away anytime soon until people start to understand better what it’s like to live with a physical limitation.

a part of our “Unstoppable” series, I had the pleasure of interviewing Nicholas “Nick” Sinagra.

Nicholas “Nick” Sinagra, 36, was born and raised in Pittsburgh, where he resides today. He earned a Master’s degree in Media Arts and Technology and a Bachelor of Arts degree in Multimedia Arts from Duquesne University, and started a business that offers technology solutions to companies, while also providing job opportunities to individuals with disabilities.

Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?

journey with spinal muscular atrophy (SMA) started when I was about six months old. My parents noticed I wasn’t developing like other infants my age — I wasn’t able to crawl or stand up independently. At the time, doctors couldn’t identify anything wrong. A few months after that, my dad heard a neurologist doing a live Q&A on the radio, so he decided to call in. The doctor immediately gave my dad the name of a physician he thought could help adequately diagnose me.

I was in and out of the hospital for testing for the next few months. Eventually, when I was about 17 months old, the doctors diagnosed me with SMA, a rare genetic disease that causes severe, progressive muscle weakness.

Because of my SMA, I rely on my wheelchair to get around and have a ventilator. At the time of my diagnosis, there was no approved treatment for SMA, so I was thrilled when SPINRAZA® (nusinersen) became available and I started treatment in 2017.

Years later I briefly tried another SMA treatment that is taken orally — I thought it could better fit my lifestyle. However, after six months I wasn’t seeing the same results I did with SPINRAZA and I felt like I was getting weaker. I’ve since switched back to SPINRAZA. Now, I’ve gained additional muscle strength in my hands that allows me to do things like brush my teeth and eat more easily.

Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?

I have lived with SMA for almost my entire life and I want to do things just like everyone else, so I have learned how to adapt. I think it’s always been about remaining positive and remembering that everyone has something they’re going through. I want to experience everything I can, such as having a fulfilling career, finding a partner and possibly getting married, and enjoying time with my family and friends. Sometimes I get frustrated when things don’t come as easily for me as they would for someone else, but then I remind myself that I too can achieve those things, even if it might require a little bit more work.

Part of my plan was finding a treatment that worked for me. SPINRAZA has certainly helped me achieve some of those everyday tasks on my own, which may seem small for someone without SMA, but to me, these are huge wins.

Can you tell our readers about the accomplishments you have been able to make despite your disability or illness ?

I have a Master’s degree in Media Arts and Technology and a Bachelor of Arts degree in Multimedia Arts from Duquesne University. In grad school, I had a 4.0 GPA and was a graduate assistant.

After college, I started my own business that offers technology solutions for companies, called Able IT Pros. I made it a priority that my company hires individuals with disabilities so they can have the opportunity to establish careers in this field.

Additionally, I am the Director of Technology at my brother’s company, PathVu, which aims to help disabled people use sidewalks and those in wheelchairs have proper access to buildings.

What advice would you give to other people who have disabilities or limitations?

For me, it’s always been about knowing what I want and having a plan on how to achieve it.

I was talking to a friend about a new business plan I’m working on and how I will get the company running. Once you have a plan in place, you have to take it one day at a time. It’s not easy, especially when you live with a disability — and there have been times when I felt frustrated — but I keep reminding myself of my plan and go for it.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

My family, especially my parents and two brothers, have been there for me since day one. My family is very supportive and it’s hard to put into words everything they have done and continue to do for me. My grandmother and aunt have also been a great support system. Similarly, I have really great friends who always treat me like a regular person — not like someone with a disability. I’ve also had some great doctors and nurses over the years.

How have you used your success to bring goodness to the world?

I believe every day is an opportunity to do something good. When I worked at a school as the Director of Technology, I would have students tell me that I inspired them over the years. I think this comes from me being myself and trying to maintain a positive attitude. I think it also comes with having a disability; I can see things differently. I know everything can change in just a moment — so I want to make sure I use every moment to be a good person.

Can you share “5 things I wish people understood or knew about people with physical limitations” and why.

There are 10,000 things I wish people understood, but most importantly I wish people knew how many false stereotypes are still out there for people with disabilities. Some people automatically assume that if an individual has a physical disability, they must have a mental disability, when in reality — there’s nothing wrong with my mind, my disability is physical. I unfortunately don’t expect this stereotype to go away anytime soon until people start to understand better what it’s like to live with a physical limitation.

Although I have my limitations, I don’t think that necessarily means I can’t live my life — it’s all about adapting and keeping a plan in mind to move forward each day.

Can you please give us your favorite “Life Lesson Quote”?

A previous teacher of mine once told me, “know what works for you and what doesn’t work for you.” It’s always stuck with me.

We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this :-)

I have two people. The first is Will Smith. I love his movies and think it’d be so much fun to talk to him about his time on Fresh Prince. I think he’s always in good spirits and seen with a smile on his face — I would love to meet him one day.

Another person is Mario Lemieux from the Pittsburgh Penguins. I’ve met him a few times but never have been able to talk with him. He’s a cancer survivor who was still able to become one of the best players in the NHL while dealing with this personal battle. He always seems to do the right thing when given a choice, and I would love to get to know him better.

Authority Magazine

Leadership Lessons from Authorities in Business, Film…

Yitzi Weiner

Written by

A “Positive” Influencer, Founder & Editor of Authority Magazine, CEO of Thought Leader Incubator

Authority Magazine

Leadership Lessons from Authorities in Business, Pop Culture, Wellness, Social Impact, and Tech. We use interviews to draw out stories that are both empowering and actionable.

Yitzi Weiner

Written by

A “Positive” Influencer, Founder & Editor of Authority Magazine, CEO of Thought Leader Incubator

Authority Magazine

Leadership Lessons from Authorities in Business, Pop Culture, Wellness, Social Impact, and Tech. We use interviews to draw out stories that are both empowering and actionable.

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