The Mark Shaparin Foundation

💜💜💜Please join Dr. Pearl, Dr. Latzer and Ms. Sime today at 2pm EST as they discuss the important topic of “How SUDEP Awareness Shapes Parental Grief, Trauma and Coping. “ This article published in the Neurology journal earlier this year, is a vital analysis of the impact of losing a child to SUDEP and the drastic difference in response to such a devastating loss to parents who were educated by their doctor about SUDEP and those who were completely uninformed and unaware. Thanks to donors like you, The Mark Shaparin Foundation has proudly funded public access to this pioneering study and manuscript so that all patients and physicians have free access to this imperative read. 💜💜💜 The webinar is hosted by PAME, Partners Against Mortality in Epilepsy. pameonline.org/future-webinar… #markshouldstillbehere #talkaboutsudepeveryvisit #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness pameonline.org/future-webinar…

As we continue challenging the public to #SlurpforSeizureSafety, we’re proud to support 💜 Purple Day 💜 — TODAY, March 26th. Purple Day unites all organizations dedicated to supporting those with epilepsy and other seizure disorders. We hope you’ll join us in wearing purple and sparking a conversation — whether you share Mark’s story or encourage a friend or co-worker to get trained in seizure first aid and CPR. During the next 100 days, we hope each of you will participate in the #RamenChallenge so that together, we can enrich the conversation about epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). Maybe in honor of Purple Day, you’ll even add some purple cabbage or eggplant to your ramen! #endtheSUDEPsecret #sudepawareness #epilepsyawareness

Amaresh accepted The Mark Shaparin Foundation Ramen Challenge and briefly discussed some recent research Who is next to accept the challenge? markshaparinfoundation.org @markshaparinfdn #slurpforseizuresafety #ramenchallenge #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness

Eric accepted The Mark Shaparin Foundation Ramen Challenge Who is next to accept the challenge? markshaparinfoundation.org @markshaparinfdn #slurpforseizuresafety #ramenchallenge #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness

Neel accepted The Mark Shaparin Foundation 2026 Ramen Challenge Who is next to accept the challenge? markshaparinfoundation.org @markshaparinfdn #slurpforseizuresafety #ramenchallenge #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness

Special thank you to News12 Connecticut for helping us spread the word about The 2026 Ramen Challenge by encouraging its viewers to “get your slurp on for a good cause!” Who is next to accept the #ramenchallenge? #slurpforseizuresafety #endthesudepsecret #sudepawareness #epilepsyawareness @News12CT Milo&Me

We can’t wait to see you today as we officially launch the 2026 Mark Shaparin Foundation Ramen Challenge: 📍Scarsdale Congregational Church: 1 Heathcote Rd, Scarsdale, NY ⏰ TODAY: Sunday, March 22, 2026 from 12:30 pm - 4:00 pm (stop by any time!) Thank you to Zeppin Ramen Restaurant for generously donating ramen for today’s event. @zeppin_ramen_official Here’s how the challenge works: 🍜 Enjoy a tasty bowl of ramen #SlurpforSeizureAwareness 📸 Snap a photo or short video and post it on social media ➡️ tag @markshaparinfdn 💜 Share a fact about epilepsy and/or why epilepsy awareness matters to you 🔁 Tag three friends and invite them to participate 🎗️ Consider making a small donation to support our mission Every post helps spark conversations, spread awareness, and show support for individuals and families affected by epilepsy. Together, we can turn a simple bowl of ramen into a powerful message of hope and unity. Thank you for being part of this community and for helping us as we launch The Mark Shaparin Foundation Ramen Challenge — and raise awareness one bowl at a time. Who is next to accept the Ramen Challenge? markshaparinfoundation.org @markshaparinfdn #ramenchallenge #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness

(Post 2 of 2) Join The Mark Shaparin Foundation for our second annual social media challenge to increase awareness about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). The Ramen Challenge is a way for our supporters and the general public to engage with our mission and was inspired by Mark’s love of the Japanese staple.  Participate by recording a video of yourself eating a bowl of ramen at a restaurant or at home and sharing it to social media with information about The Mark Shaparin Foundation. The challenge will run for 100 days starting today, March 22nd and wrapping up June 30th. We hope you’ll join us in participating and nominating your friends to take the challenge! The more people who are aware of SUDEP, the more lives that can be saved.  Who is next to accept the Ramen Challenge? markshaparinfoundation.org @markshaparinfdn #slurpforseizuresafety #ramenchallenge #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness

(Post 1 of 2) Join The Mark Shaparin Foundation for our second annual social media challenge to increase awareness about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). The Ramen Challenge is a way for our supporters and the general public to engage with our mission and was inspired by Mark’s love of the Japanese staple.  Participate by recording a video of yourself eating a bowl of ramen at a restaurant or at home and sharing it to social media with information about The Mark Shaparin Foundation. The challenge will run for 100 days starting today, March 22nd and wrapping up June 30th. We hope you’ll join us in participating and nominating your friends to take the challenge! The more people who are aware of SUDEP, the more lives that can be saved.  Who is next to accept the Ramen Challenge? markshaparinfoundation.org @markshaparinfdn #slurpforseizuresafety #ramenchallenge #EndTheSUDEPSecret #SUDEPAwareness #epilepsyawareness

This weekend we are exhibiting at the 2026 Pediatric Conference: Addressing Challenges in Modern Pediatrics presented by the Pennsylvania Chapter of the American Academy of Pediatrics. If you are attending the conference please stop by our booth to learn more about Seizure Safety and Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP takes more than 8 lives every day and is the leading cause of death in patients with epilepsy. However, most doctors including pediatricians have never heard of it. The Mark Shaparin Foundation is committed to ensure that all medical professionals are educated about Sudden Unexpected Death in Epilepsy (SUDEP) so that no matter their medical specialty, they can inform their patients with epilepsy about the risk of SUDEP and how to provide life saving care. Learn more and support our efforts to educate medical providers about SUDEP at markshaparinfoundation.org @AmerAcadPeds #PAAAP #SUDEPawareness #EndTheSUDEPSecret #SUDEP #talkaboutsudepeveryvisit

The Mark Shaparin Foundation Ramen Challenge will officially start in just 2 weeks! Join The Mark Shaparin Foundation for our Ramen Challenge Kick-Off Event. As we launch our second annual social media challenge, we're gathering in-person to encourage our supporters and the general public to record a video of themselves eating a bowl of ramen with the goal of increasing knowledge about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP).  📅 When: Sunday, March 22nd from 12:30 p.m. - 4:00 p.m. 📍 Where: Scarsdale Congregational Church (1 Heathcote Rd, Scarsdale, NY 10583) 🍜 What: We’ll kick off the 2026 Ramen Challenge with delicious bowls of ramen from local restaurants. Record your video for social media at the event and encourage others to join you in raising awareness about Epilepsy and SUDEP. Additional details: Participants are welcome to stop by any time and stay as long as they like.  The event is free.  Donations are optional to attend and will support our mission of educating healthcare providers and the general public about risk factors and prevention methods for SUDEP with the ultimate goal of saving lives. Register at:  secure.givelively.org/event/the-mark… #SlurpforSeizureSafety #EndTheSUDEPSecret #SUDEPAwareness #SUDEP #EpilepsyAwareness

In just a few weeks we’re getting ready to raise awareness about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP) in our own way through a new social media challenge – The 2026 Ramen Challenge! Last year, we completed our first challenge — The Escargot Challenge — with the help of so many of you who participated by trying one of Mark’s favorite French dishes. This year, we’re once again honoring Mark’s love of delicious flavors and pivoting to the beloved Japanese staple. The Ramen Challenge will officially start on March 22nd and will continue for 100 days until June 30th. We’ll send more details soon about how you can participate in an in-person event.    Interested in helping out, sponsoring the challenge or hosting your own in-person event for The Ramen Challenge? Reach out to us! We’d love to hear your ideas and collaborate. Thank you for being part of our community. We can’t wait to accomplish much more this year – together with you and all our amazing supporters. #SlurpforSeizureSafety #EndTheSUDEPSecret #SUDEPAwareness #SUDEP #EpilepsyAwareness

Mark outgrew his cow milk protein intolerance when he turned three years old.  So we took him to Omonia, our favorite local cafe, for ice cream.  Most kids prefer vanilla or chocolate.  Not Mark! He ordered, of all flavors, pistachio with whipped cream, sprinkles and a cherry on top.  He was so happy devouring his sundae.  On February 26th, National Pistachio Day, we remember the the first time Mark enjoyed (milk based) ice cream. #markshouldstillbehere #nationalpistachioday Sudden Unexpected Death in Epilepsy (SUDEP) takes one life every 3 hours and is the leading cause of death in patients with epilepsy.   However, most neurologists and epileptologists do not routinely disclose SUDEP risk factors and prevention strategies to patients or their care givers.  The Mark Shaparin Foundation is committed to #EndTheSUDEPSecret Learn more and help us save lives at markshaparinfoundation.org #sudepawareness #SUDEP @Omoniacafe

“Seizures kill.” This simple two word sentence might be the most powerful and important statement in all of the medical literature about seizures and epilepsy. “We have not been telling the full story. Seizures are bad for the brain and can be fatal.” This honest admission might be the most profound and accurate sentence related to the care many epilepsy patients receive that I have read since we started this journey to save lives. Thank you Dr. Orrin Devinsky, Dr. Tanya Spruill, Dr. David Thurman, and Dr. Daniel Friedman for the elegant summary of the causes of death related to seizures and epilepsy as well as proposing interventions. Published 10 years ago yesterday, the article entitled “Recognizing and preventing epilepsy-related mortality: a call for action”is as relevant today as it was at the time of publication. “We have done too little to prevent epilepsy-related deaths.” As stated, simply not enough is being done to prevent people from dying. This article is a must read for all healthcare providers, caregivers and patients. It’s a long read but mostly written in layman’s terms. Feel free to reach out if you need something explained further. It’s available for free at neurology.org and on pubmed.org pmc.ncbi.nlm.nih.gov/articles/PMC47… Learn more and support our mission at markshaparinfoundation.org #seizureskill #endtheSUDEPsecret #SUDEP #sudepawareness #eplepsyawareness

February 9th to 16th is Seizure Action Plan Awareness Week 2026.   Every person with a history of seizures or epilepsy should have a personalized Seizure Action Plan.  Seizures can affect heart and lung function. Shortly after the conclusion of a seizure, heart and lung function typically returns to normal, however, sometimes it does not. It is important to recognize if a life threatening condition is developing. A caregiver needs to make sure that the patient’s airway is not obstructed, that the chest-wall is rising and that there is a pulse. A digital device such as a pulse oximeter can also help assess heartbeat and oxygen saturation. Additionally, specialized wearable seizure detection devices and smartwatches can also provide helpful information.  It is important to continuously assess both heart and lung function immediately after any seizure ends until the person is fully awake and alert. Call 911 if something doesn’t seem right and consider starting CPR, if needed while waiting for EMS to arrive. The Mark Shaparin Foundation is committed to ensuring all patients, caregivers, healthcare providers and the general public are educated about the risks of seizures, seizure safety and Sudden Unexpected Death in Epilepsy (SUDEP) including the need to actively assesses vital signs and start CPR, if needed. Learn more and support our life saving mission at markshaparinfoundation.org #SAPAW2026 #seizureactionplan #seizureactionplans #sudepawareness #endtheSUDEPsecret

Valentine’s Day is about love. For those of us that have lost our child or loved one to Sudden Unexpected Death in Epilepsy (SUDEP), it is also about excruciating heartbreak. The medical community and the world need to know about this traumatic loss directly from the devastated parents and, particularly, the parents who did not know about SUDEP until it was too late. This is why we participated in the study entitled “SUDEP Awareness and Effect on Parental Trauma, Grief, and Coping After the Death of a Child: A Qualitative Investigation.” All our stories need to be told and should be avialable to be read by anyone brave enough to read them. However, this article is currently hidden behind a password protected paywall. This is why today, out of love for all those who passed away because of SUDEP and, especially, out of love for the families that were never given a chance to try to save their child or loved one, The Mark Shaparin Foundation paid the fee to guarantee open access to everyone for free to this vitally important paper. When the open access link is available in a few days, we hope that everyone will read this manuscript and we courage patients and their families to print it out and give it to their doctors and other healthcare providers. The Mark Shaparin Foundation is committed to ensuring that every healthcare professional is educated about seizure safety including Sudden Unexpected Death in Epilepsy (SUDEP) and that every neurologist and epileptologist talks about SUDEP at every visit related to seizures and epilepsy. We need your help to accomplish our mission. Please visit our website and consider making a contribution. 100% of donations will go towards our mission. The Mark Shaparin Foundation is a registered 501(c)(3) nonprofit. markshaparinfoundation.org #markshouldstillbehere #SUDEP #sudepawareness #endtheSUDEPsecret #talkaboutsudepeveryvisit

Always spreading sweetness, especially on Valentine’s Day ❣️ 💕💗🍫🍍💘💌💓💝💕 And so began Mark’s love affair with Edible Arrangements. Not only are they gluten free and nutritious, the cats wouldn’t eat them and wind up in the vet ER from flower poisoning. 💗 🧠 💗 🧠💗🧠💗🧠💗🧠 Extra love to our friends, family and followers and to those who battle epilepsy and the loved ones who support them through it. Only through the strength of love and support can we truly band together and conquer this disease and save lives. @ediblearrangements #valentinesday #epilepsy #eplepsyawareness #SUDEP #sudepawareness #markshouldstillbehere

To be part of our family, you had to love hot chocolate. ☕️ Your throat hurts? 🤒 Here’s some hot chocolate. You just played outside in the snow? ❄️ Hot chocolate as soon as you walk in the door. Today is Saturday? Sounds like we need a nice cup of hot coco. We would definitely be having hot chocolate today on January 31st National Hot Chocolate Day. 🍫 By age 10, Mark had become a hot chocolate conoseur. His favorites were La Maison du Chocolat and LA Burdick, which both required a drive into Manhattan….but it was worth it. A favorite trick of Mark’s was adding vanilla ice cream 🍨 directly into his mug of hot chocolate…in addition to all of the usual fixings (marshmallows, whipped cream, and coco powder). Try Mark’s vanilla ice cream trick today and let us know what you think in the comments below. 👇 ☕️ 🍫 😋 @BurdickChocolat @maisonduchoco #NATIONALHOTCHOCOLATEDAY #HOTCHOCOLATEDAY #markshouldstillbehere Sudden Unexpected Death in Epilepsy (SUDEP) takes one life every 3 hours and is the leading cause of death in patients with epilepsy. However, most neurologists and epileptologists do not routinely disclose SUDEP risk factors and prevention strategies to patients or their care givers. The Mark Shaparin Foundation is committed to #EndTheSUDEPSecret Learn more and help us save lives at markshaparinfoundation.org #sudepawareness

Today on 1 in 26 Day, a day to recognize and honor individuals diagnosed with epilepsy, ask yourself how do you know if you or your child has epilepsy? Many patients are unaware that they are having a seizure themselves. Therefore, someone else: your parents, your friends, your teachers, your coworkers, someone, anyone has to recognize that you may be having a seizure or may have had a seizure. But what if you or your child sleeps alone and has primarily or only nighttime seizures. How would you know? Many common signs and symptoms of having had a seizure are non-specific including: feeling “out of it,” headaches, drowsiness, fatigue, nausea, and muscle soreness. We had no idea that Mark had epilepsy until Mark fell out of bed after his first “known” seizure. His diagnosis was the most common type of childhood epilepsy: Benign Roland Epilepsy aka SELF-LIMITED EPILEPSY WITH CENTROTEMPORAL SPIKES (SeLECTS). In this type of epilepsy, the seizures occur primarily in the persons sleep. 1 in 10 people will have at least one seizure. 1 in 26 will be diagnosed with epilepsy in their lifetime. Today we honor and bring awareness to people with epilepsy including those that may not know it yet. The Mark Shaparin Foundation is committed to raising awareness about seizures, epilepsy, and seizure safety including Sudden Unexpected Death in Epilepsy (SUDEP) risk factors and prevention. Learn more about our mission and impact at markshaparinfoundation.org #1in26 #epilepsy #epilepsyawareness #sudep #sudepawareness

There is a connection between autism and epilepsy with some articles stating that up to 40% of patients with autism also have epilepsy. This is why The Mark Shaparin Foundation exhibited this weekend at the Association for Behavior Analysis International’s (ABAI) 20th Annual Autism Conference held in New York City. Only 1 of the over 100 attendees we spoke with had ever heard of Sudden Unexpected Death in Epilepsy (SUDEP). The Mark Shaparin Foundation is committed to educating all healthcare professions, no matter the specialty or background, about seizure safety and SUDEP risk factors and prevention with the goal of saving lives. We would like to give a special thank you to our ambassadors Spencer Choice and David Agbato for their support this weekend. Learn more about our mission and impact at markshaparinfoundation.org #endtheSUDEPsecret #talkaboutsudepeveryvisit #sudepawareness #SUDEP