Attending medical conferences as exhibitors and speaking directly with healthcare providers of all specialties including physicians, physician assistants, nurse practitioners, nurses, paramedics, and emergency medical technicians.
Creating high quality interactive continuing medication education activities related to Seizure First Aid and SUDEP for healthcare providers in all specialties.

Reaching out to medical schools and conducting lectures to medical students about SUDEP.
Generating social media and other advertising campaigns about SUDEP risk factors and prevention strategies.
Holding events, in partnership with community organizations and companies, that educate the public about SUDEP and honor Mark’s life.

Impact Timeline

Our first conference presentation! We presented at The 13th Annual New York & New Jersey Pain Medicine Congress, where we spoke to over 200 attendees. Out of these 200+ healthcare providers, only a few 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.

We presented at the New York State Society of Anesthesiologists 78th PostGraduate Assembly in Anesthesiology, where we spoke to about 150 attendees. Out of these 150 healthcare providers, only 8 had prior knowledge about SUDEP.
The following weekend, we 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 the healthcare providers had previous knowledge about SUDEP; however, most shared that they received very few referrals for surgical consultations despite there being many patients on multiple medications with refractory epilepsy.
We presented at the Eastern Pain Association NYC 59th Annual Conference, where they spoke with about 50 attendees — only two of whom had prior knowledge about SUDEP.
On Sunday, December 29, we hosted our first event — Mark's March for Lights: Holiday Walk-a-Thon in the Dyker Heights neighborhood in Brooklyn. Of the 80+ participants, only two had previously heard about SUDEP.

We 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 thought SUDEP only happened after many years of uncontrolled seizures. The pain-trained neurologist was surprised to learn SUDEP can happen after just one seizure and committed to changing his practice to educating patients at the first visit.

We successfully launched and wrapped our first social media campaign — The Escargot Challenge — with participation from our donors and advocates including members of the medical community.
The challenge culminated in an in-person event on March 22 at Wayside Cottage in Scarsdale, NY.
We hosted a table at The Kimball Cup AAU Diving, Purchase College in Purchase, New York.

We exhibited at the American College of Physicians Internal Medicine Meeting from April 3-5 in New Orleans. Exhibiting at this meeting was made possible by a grant from Neurelis, a biotechnology company that develops innovative treatments for people living with epilepsy and other neurological conditions.
Approximately 300 physicians stopped by our booth, giving us the opportunity to educate primary care providers about SUDEP risk factors and prevention strategies.

From May 2-4, we attended the New Jersey Academy of Family Physicians Annual Meeting in Atlantic City, where we met many providers who were unaware of SUDEP.
From May 16-17, we exhibited at the Delaware Academy of Family Physicians Annual Meeting in Lewes, Delaware.
From May 28-30, we attended the Epilepsy Therapies & Diagnostics Development XVIII Symposium (ETDD) in Leesburg, Virginia. We learned more about high-quality, specialized wearable and video seizure detection device, which are critical to monitoring seizures and preventing SUDEP.
We participated in a study at Boston Children’s Hospital and Harvard Medical School, where researchers are seeking to better understand the experiences of parents who have lost a child to SUDEP. The researchers are aiming to raise SUDEP awareness and revise clinical guidelines to save lives.

On Wednesday, June 11, we exhibited at the New Jersey Chapter of the American Academy of Pediatrics Annual Conference & Exhibition in Somerset, New Jersey.

Exhibiting at the American Society of Pain & Neuroscience Annual Conference, from July 17-20

Attending Partners Against Mortality in Epilepsy & American Epilepsy Society Meeting: December 4-9

Foundation Impact