Foundation Impact
To increase awareness about Sudden Unexpected Death in Epilepsy (SUDEP), The Mark Shaparin Foundation will:
Attend medical conferences as exhibitors and speak directly with healthcare providers of all specialties including physicians, physician assistants, nurse practitioners, nurses, paramedics, and emergency medical technicians.
Create high quality interactive continuing medication education activities related to Seizure First Aid and SUDEP for healthcare providers in all specialties.
Reach out to medical schools and conduct lectures to medical students about SUDEP.
Generate social media and other advertising campaigns about SUDEP risk factors and prevention strategies.
Hold events, in partnership with community organizations and companies, that educate the public about SUDEP and honor Mark’s life.
Impact Timeline
November 2024
The Mark Shaparin Foundation presented at The 13th Annual New York & New Jersey Pain Medicine Congress, where they spoke to over 200 attendees. Out of these 200+ healthcare providers, only 5 had prior knowledge about SUDEP.
Dr. Naum Shaparin, Mark’s dad, presenting at the 13th Annual New York & New Jersey Pain Medicine Congress in November 2024.
December 2024
The Mark Shaparin Foundation presented at the New York State Society of Anesthesiologists 78th PostGraduate Assembly in Anesthesiology, where they spoke to about 150 attendees. Out of these 150 healthcare providers, only 8 had prior knowledge about SUDEP.
The following weekend, The Mark Shaparin Foundation presented at The 2024 Joint Pediatric Section Annual Meeting of Congress of Neurological Surgeons and the American Association of Neurological Surgeons/CNS Section on Pediatric Neurological Surgery, where they spoke with over 75+ attendees. Almost all of the healthcare providers had previous knowledge about SUDEP, however most commented that they received very few referrals for surgical consultations despite there being many patients on multiple medications with refractory epilepsy.
The Mark Shaparin Foundation also presented at the Eastern Pain Association NYC 59th Annual Conference, where they spoke with about 50 attendees. Out of these 50, only 2 had prior knowledge about SUDEP.
On Sunday, December 29th 2024, The Mark Shaparin Foundation hosted its first event - Mark's March for Lights: Holiday Walk-a-Thon in the Dyker Heights neighborhood in Brooklyn. Of the 80+ participants only 2 have previously heard about SUDEP.
January 2025
The Mark Shaparin Foundation exhibited at the North American Neuromodulation Society Annual Meeting, where they spoke with 75+ attendees. Only about 10 had previous knowledge about SUDEP, however one of them truly believed that SUDEP only happened after many years of uncontrolled seizures. The pain trained neurologist was surprised to learn SUDEP can happen after even the first seizure and committed to changing his practice to educating patients at the first visit.
Future Events/Plans
February
Escargot Challenge on Social Media
March
Table at The Kimball Cup AAU Diving, Purchase College, Purchase, NY
April
Exhibiting at the American College of Physicians Internal Medicine Meeting Meeting Aprl 3-5, 2025, Booth 1722
July
Exhibiting at the American Society of Pain & Neurosc Annual Conference, July 17-20, 2025
November
Epilepsy Awareness Day, November 10-13, 2025
December
Partners Against Mortality in Epilepsy & American Epilepsy Society 2025, December 4-9, 2025