After a Tragic Loss, Quaker Ridge Family Launches Foundation in Honor of Their Son

In April 2024, the Scarsdale community was rocked by the sudden passing of a beloved Quaker Ridge 5th grade student Mark Shaparin. A kind, loving, and thoughtful ten year old with a true appreciation for life, Mark was adored by his family, friends, teachers and all who had the pleasure of knowing him.

Though Mark was an otherwise healthy and adventurous young boy, on April 5, 2024, he had his first known seizure and his parents Naum and Joanne rushed him to a local emergency room. During this visit all tests were normal, and the family was told to see a neurologist. Two days after his first seizure, Mark was seen by a pediatric epilepsy specialist and was diagnosed with Benign Rolandic Epilepsy (BRE) also known as Self-Limited Epilepsy with Centrotemporal Spikes (SLECTS). The family learned that BRE is a common night-time childhood seizure disorder that usually resolves on its own during the mid teenage years.

While Mark was scheduled to undergo additional testing, medications were not recommended and the family was told to take their upcoming vacation and to proceed with life as normal. Mark was given an excellent prognosis, which was consistent with internet searches of his diagnosis on reputable websites. His parents, both medical professionals, were not aware or made aware of Sudden Unexpected Death in Epilepsy (SUDEP).

Less than two weeks after his diagnosis, Mark suffered his second known seizure and tragically passed away in his sleep. It was only after his passing that Mark’s parents first learned about SUDEP. Devastated by what they feel was a preventable death, Naum and Joanne became determined to create more awareness about SUDEP and started The Mark Shaprin Foundation in their cherished son’s name.

According to their website, the foundation’s mission is:

“The Mark Shaparin Foundation leads educational initiatives for healthcare providers and families across the country to increase knowledge about Sudden Unexpected Death in Epilepsy (SUDEP). Their focus is on raising awareness about risk factors and preventative measures and creating a robust national dialogue about SUDEP in and out of the medical community. Through these initiatives, the goal of the foundation is to reduce the incidence of these devastating deaths — currently at approximately 1 in 1,000.

SUDEP is not routinely taught in medical school or other medical training programs, making it especially dangerous. For medical providers with knowledge of SUDEP, many do not discuss it with their patients for fear of alarming them and their families. The Mark Shaparin Foundation’s focus on educating providers, patients, and the public about SUDEP distinguishes it as an essential nonprofit organization in the epilepsy and seizure disorder community.

Through educational initiatives, events, and fundraisers, The Mark Shaparin Foundation commemorates Mark’s extraordinary life and passions. At the heart of every program organized by the foundation are the love and joy that Mark brought to his family and everyone he knew.”

Joanne and Naum especially want parents and medical professionals to be aware that while SUDEP is rare, it can happen to anyone who experiences seizures, even febrile seizures. They also suggest steps to minimize the risk of SUDEP such as using a seizure motion detection monitor and a physiological monitor like an apple watch to monitor heart rate. They also suggest that family members become certified in CPR and keep a tank of oxygen in their homes.

Aside from creating awareness through efforts like attending medical conferences and speaking directly with healthcare providers of all specialties including physicians, physician assistants, nurse practitioners, nurses, paramedics, and emergency medical technicians, Naum and Joanne have taken steps such as reaching out to medical schools to conduct lectures to medical students and advocating to have information about SUDEP included in the curriculum and textbooks.

For their first social media challenge The Mark Shaparin Foundation is holding an “Escargot Challenge.” The Foundation’s website describes this challenge by saying:

“Our first official social media challenge launched on Wednesday, February 26th! In honor of Mark’s adventurous palette, we’ve decided to raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP) by challenging our supporters, followers, and anyone on the Internet to eat escargot. Why escargot? Mark loved trying new foods and couldn’t wait to try escargot for the first time at The Hollywood Brown Derby in Disney World's Hollywood Studios at 8 years old.

Join The Mark Shaparin Foundation for our Escargot Challenge culminating event on Saturday, March 22 from 3-7 pm at Wayside Cottage in Scarsdale. Our live event will support our social media challenge, which has raised awareness about epilepsy and Sudden Death in Epilepsy (SUDEP) throughout the month of March.

We'll have escargot available at our event for anyone who would like to partake in the challenge as well as gummy and chocolate snails for our supporters that want to participate but are unable to eat a “real” snail.”

Click here to register:

Though Joanne and Naum have experienced the most unimaginable pain, they have somehow managed to persevere through their heartache to create a foundation of hope that honors their son Mark. They recognize they could never have forged ahead on their own and express immense gratitude for the Scarsdale community who came together to support them in their time of need. From meal trains to words of encouragement, Joanne and Naum are forever grateful for the tremendous outpouring of love and support.

To learn more about Mark and his story, see here.