PM360 recently spoke to Paul Murasko, Sr. Director Multi-Channel Marketing, Customer Strategy and Shared Services, Sunovion Pharmaceuticals, about helping children with Down syndrome.

The Murasko family was part of the National Down Syndrome Society (NDSS) 2018 video that was shown in Times Square for the NYC Buddy Walk.

PM360: Tell me about this new non-profit, Special & Determined, that you and your wife are starting.

Paul Murasko: Our primary goal is to raise funds so we can award grants to families of children with Down syndrome to fill the gap in insurance coverage that exists in providing therapy coverage. Basically, from newborn to age three almost all families are covered for the early interventional therapies—particularly the three core ones (physical, occupational, and speech). But, there is a potential coverage gap between the ages of three and five to seven when a child starts in school, depending on how the individual was diagnosed. We learned this the hard way with my son, Jacob, who has Down syndrome. Fortunately, we were able to cover the out-of-pocket costs. However, a lot of families are not able to do that and the financial strain results in the child not receiving the needed therapies to help them grow and develop.

How will you determine who gets the grants?

There will be a process in which individuals can submit a request for a grant online.

Then, depending on how much money we raise, we will provide a series of six-month grants. We hope eventually to be raising enough funds that we don’t have to turn anyone away.

What else will the non-profit offer?

The second side of Special & Determined is education and awareness. We’re going to have a resource center to make sure people are trying all available financial support options prior to coming to us, because we want to focus on filling the gap of what is not covered. A number of great organizations are already established for the Down syndrome community and we are not trying to take away from what they are doing. We hope to partner with them and, together, help every individual with Down syndrome reach their full potential.

What else do you hope to offer in the future?

We know we will not raise a ton of money right away, so that is why we are focusing on the three core therapies—physical, speech, and occupational. However, eventually our hope is to offer grants for any therapy that can help a child with Down syndrome grow, such as music therapy or riding therapy. Studies have shown that all of these various therapies help children have a better opportunity to flourish. And we want children with Down syndrome to grow and have the fullest and most independent life possible.

That’s a wonderful goal.

Thanks, and I want to thank my wife, Marla, who has been leading the charge to get our charity off the ground. And our daughter, Amanda, who just finished graduate school with an MSW in social work and is starting to get involved. This foundation is in honor of our son, Jacob. The family is fully committed, and we are excited to finally get started. If you would like to know more about Special & Determined or get involved, visit www.specialanddetermined.org.

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