Kyle and Laura Derkowski live in Ashburn, Virginia and are co-chairs of the Cure SMA Virginia Chapter. Kyle is originally from Schenectady, New York and Laura from Bethlehem, Pennsylvania; the pair met during their first year in college through a mutual friend and were married in December 2014. The Derkowskis recently shared with Cure SMA their perspective on hope, community and leadership.
At 18 months old, Kyle was diagnosed with spinal muscular atrophy (SMA) type 2. “Throughout my childhood, in the absence of medicine, the only treatment was hope. That hope was found within the SMA community,” Kyle said.
He first got involved with Cure SMA back when it was called Families of SMA. “It is a really special community. SMA is such a rare disease but it is a disease that affects people in same ways. We all have similar stories and symptoms, so the best way to adapt is to come together and share information.”
SMA is a rare disease; Kyle recalls that little was known about it when he was young. Many medical professionals didn’t know what SMA was or had the resources to make the best recommendations for their patients. As a child, Kyle says his family relied on the booklets and pamphlets from Cure SMA to help medical staff understand his needs and to ensure he received the best care. “It’s a scary thing to go to a doctor that knows less about your disease than you do. Being able to point them to a place with expert knowledge and advice would be an incredible relief.”
Today, Kyle works as a Software Engineer at the Department of Defense. He graduated with his bachelor’s degree in computer science and communications from the College of St. Rose and obtained his master’s degree in information technology from Rensselaer Polytechnic Institute.
In 2014, Laura attended her first Annual SMA conference with Kyle. “I absolutely loved all of the SMA families and how they come together to support one another. We are so grateful to know them,” Laura said.
Kyle reflects on how his role has changed in the SMA community. “Attending [conference] as an adult, made me realize that I could be a positive example for those who were younger than me. When I was a kid I had a couple people with SMA that I looked up to and it gave me a lot of hope. I thought it was my duty to offer a similar example to others,” he said.
Since then, Kyle and Laura started the Cure SMA Virginia Chapter. “We were both happy to volunteer. Since the chapter began in 2015, we have held four Walk-n-Roll events and raised nearly $100,000. We love watching the Walk-n-Roll teams return every year and seeing new teams form, growing the community of families and volunteers.”
This year, the Virginia Chapter is hosting the 5th annual Virginia Walk-n-Roll on October 19th and the Inaugural Virginia Evening of Hope on June 13th at the Winery at Bull Run in Centreville, Virginia.
When asked what he would tell his younger self, Kyle said “I would tell myself that all the years of hope will be realized, a treatment will be discovered in my lifetime and someday you are going to meet an amazing girl to share your life with. Also, invest in Google.”
Staying hopeful and having a strong support system also inspires Kyle, “The thing I’m most proud of is never truly despairing, even in the darkest of times.”
In closing, Kyle shares his advice to youth and other adults in the SMA community:
“Don’t limit your dreams to what other people tell you that you can or can’t do. One of the benefits to having SMA is that you have to develop creativity just to survive. Use every ounce of that creativity to figure out how to do what you want to do and don’t give up until you achieve your goals. Always stay positive. Don’t waste a second feeling sorry for yourself, you’ll only realize your situation is exactly the same as when you started. It is also important to be realistic (I eventually had to give up on my dream of being a running back for the New York Giants) but there are plenty of careers that only require a sharp mind and a strong work ethic. Figure out where your passion intersects with your gifts and go after it. The world has never been more accessible.”
The Derkowskis plan to continue turning their passion into action and helping all people affected by SMA.
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