The Mark Shaparin Foundation

@markshaparinfdn.bsky.social

The Mark Shaparin Foundation honors the life and legacy of Mark Shaparin through awareness, education, and action to prevent Sudden Unexpected Death in Epilepsy (SUDEP) with the goal of saving lives.

It’s Mark’s 13th birthday! 🩵🎉 Even though Mark is not with us physically, he’s with us every day in the way we view the world, reminding us to live with compassion, kindness, and patience. We couldn’t be more proud of the person Mark will always be. We love and miss you more than words can describe.

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This week is bittersweet as we get ready to celebrate Mark’s 13th birthday next Wednesday. Every year, we looked forward to making it as special as he made everyone around him feel. Whether it was his fave bday cake or riding in a helicopter, the greatest gift was seeing the happiness on his face.

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Pictured: Mark in 2022 at the house of Betsy Ross, designer of the first American Flag Wishing everyone a safe, relaxing, and joyful holiday with friends and family, time spent outdoors, and delicious food. We hope your 4th of July is filled with wonderful moments and cherished memories. ❤️

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2026 NJ Academy of Family Physicians Annual Meeting-TECHNOLOGY IN MEDICINE. Talked about video-assisted & wearable seizure detection devices and monitoring vital signs after a seizure. MORTEMUS study showed that CPR within 3-mins of post-seizure apnea (the cessation of breathing) was life saving.

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At the inaugural Epilepsy Awareness Day in DisneyWorld. Btw 1/3-1/2 of conference goers had heard about SUDEP before. Most learned about it from social media or other nonprofis; not from their doctor.   The primary source of all medical information patients receive should come from their doctor!

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We tabled at the Profound Autism Summit in Boston. 20%-40% of patients with autism have epilepsy & up to 60% of patients with autism have an irregular EEG, even if they’re not having seizures. Most people & most healthcare providers, do not know about SUDEP or the link between epilepsy & autism

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Please join us on June 7th as The Mark Shaparin Foundation presents: Movie Night in NYC featuring “Under the Lights” Tickets are now on sale for this advance screening with Filmmaker Miles Levin in Person! We would like to thank UCB for their generous support as the Lead Sponsor of this event.

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