Foundation Impact
To increase awareness about Sudden Unexpected Death in Epilepsy (SUDEP), The Mark Shaparin Foundation is:
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
November 2024
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.
December 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.
January 2025
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.
February & March 2025
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.
April 2025
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.
May 2025
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.
June 2025
June 11, we exhibited at the New Jersey Chapter of the American Academy of Pediatrics Annual Conference & Exhibition in Somerset, New Jersey.
June 21, we were invited to table at the Joanna Sophia Foundation’s 6th Annual Fun Run/Walk Around the World in 5K held today in Queens, New York
July 2025
We were invited to the inaugural Chicago Monogenic Epilepsy Summit (CHIMES), led by Data for the Common Good with sponsorship from the Chan Zuckerberg Initiative on July 14 -15.
We exhibited at the 7th Annual Meeting of the American Society of Pain and Neuroscience in Miami Beach, Florida from July 17-20.
We had a booth at the American Academy of Family Medicine’s FUTURE - The National Conference For The Future of Family Medicine, as City, Missouri, on July 31 to August 2.
September 2025
September 7, we tabled at the Epilepsy Foundation of Northeastern New York 2025 Hudson Valley Walk for Epilepsy.
September 10, we exhibited at the 2025 Connecticut Chapter of the American Academy of Pediatrics Annual Meeting in Cromwell, CT.
September 13, we tabled at Milo&Me’s 2nd Annual “Shop Out For Seizures” event. We are grateful for the opportunity to participate and to speak at the event.
September 26th to 30th, we had a booth at the American Academy of Pediatrics Experience 2025 National Conference & Exhibition in Denver, Colorado together with educational ambassadors Kateryna Slinchenkova and Spencer Choice.
October 2025
To honor SUDEP Action Day on October 15th, we launched a new “Talk About SUDEP Every Visit” clothing pin. If you would like a pin please send us your mailing address via the contact page or by sending an email to info@markshaparinfoundation.org.
October 17-19, we exhibited at the New York State Society of Physician Associates (NYSSPA) 2025 CME Conference in Albany, NY. That Sunday, we were honored to be invited to give our first formal continuing medical education lecture. Lisa Campo, PA-C, a close friend and Past President of the NYSSPA, was our co-presenter.
October 22, we presented at the New Jersey Chapter of the American Academy of Pediatrics 34th Annual School Health Conference in Somerset, New Jersey together with Sophia Seeger of Milo&Me.
November 2025
November 6-9, we were honored to return this year to the 14th Annual New York & New Jersey Pain Medicine Congress together with Kateryna Slinchenkova and Spencer Choice. Last year, this was our first event. We are grateful for their continued generous support.
November 10-11, we had a table and were invited to speak five times at 13th Annual Epilepsy Awareness & Education Expo at the Disneyland Hotel Convention Center, Anaheim, California.
December 2025
December 3-4, we attended the Partners Against Mortality in Epilepsy (PAME) Conference in Atlanta. We also helped to sponsor this important annual event at the “Trendsetter” level. We were honored to tell Mark’s story as faculty for the breakout panel entitled “Conversations That Matter: Navigating Loss and Grief in Epilepsy Care.”
December 5-9, we exhibited at the American Epilepsy Society's 2025 Annual Meeting in Atlanta, Georgia together with Sherry Culvahouse and Spencer Choice.
December 6, our ambassador Dr. Rebecca Siegel was representing The Mark Shaparin Foundation at the Eastern Pain Association’s Annual Meeting in New York City.
December 13-14, we tabled at the 79th Postgraduate Assembly hosted by the New York State Society of Anesthesiologists (NYSSA).
December 20th was our 2nd Annual Mark’s March for Lights: Holiday Walk-a-Thon.
