The Mark Shaparin Foundation

Honoring the life & legacy of Mark Shaparin through awareness, education & action to prevent Sudden Unexpected Death in Epilepsy with the goal of saving lives.

[The Mark Shaparin Foundation @markshaparinfdn]

A few weeks ago, we were in Atlantic City, NJ, for the 2026 New Jersey Academy of Family Physicians Annual Meeting with a focus on “TECHNOLOGY IN MEDICINE.”

This was the perfect place to talk about the importance of using video assisted and wearable devices to help never miss a seizure and to carefully monitor vital signs with digital devices after a seizure for signs of heart or lung dysfunction.

The landmark international 2013 MORTEMUS (MORTality in Epilepsy MOnitoring Unit Study) study demonstrated that starting CPR within a critical 3-minute window following post-seizure apnea (the cessation of breathing) successfully resuscitated 100% of studied cases.

The Mark Shaparin Foundation is committed to increasing awareness about seizure safety and sudden unexpected death in epilepsy (SUDEP) in the medical community and beyond.

Learn more and consider making a donation at https://t.co/QrmnwZODOe

#NeverMissASeizure
#endtheSUDEPsecret
#talkaboutsudepeveryvisit
#SUDEP
#sudepawareness
@aafp
@NJAFP
@NJAFPMeetings

[The Mark Shaparin Foundation @markshaparinfdn]

There are only a few tickets left,
so be sure to save your seat!

Use links to go to https://t.co/uoInCVzt85

We would like to thank UCB for their generous support as the Lead Sponsor of this event as well as our community supporters Paul’s Purple Warriors, Milo&Me, Joanna Sophia Foundation and Epilepsy Services of New Jersey.

#underthelights
#epilepsy
#epilepsyawareness
#seizures
#sudep
@underthelightsfilm
@markshaparinfdn
@warriors_paul
@EpilepsyNJ
@milesdlevin
@UCBUSA

[The Mark Shaparin Foundation @markshaparinfdn]

Sunday, May 31st is National Smile Day. Mark was always smiling. It was really hard to pick from the almost 100,000 family pictures we have. After much debate, we picked this picture of Mark being Mark and happily smiling after just waking up in his crib at 1 and half years old. We encourage everyone to post a picture of themselves smiling and thinking of Mark today. Visit our webpage to learn more about Mark and see more pictures of his joyous smile at all ages at https://t.co/QrmnwZODOe

#nationalsmileday
#markshouldstillbehere
#endtheSUDEPsecret
#SUDEP
#sudepawareness

[The Mark Shaparin Foundation @markshaparinfdn]

Alysia accepted The Mark Shaparin Foundation Ramen Challenge to increase awareness about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP).

Who is next to accept the ramen challenge?

#slurpforseizuresafety
#ramenchallenge
#EndTheSUDEPSecret
#SUDEPAwareness
#epilepsyawareness
@markshaparinfdn
@FulgentGenetics
@AmericaEpilepsy
@EpilepsyAFLA

[The Mark Shaparin Foundation @markshaparinfdn]

Saturday, May 30 is National Creativity Day!  Today we celebrate imagination. Mark was always trying new things and being silly. Unfortunately, we don’t know exactly what Mark was doing in this picture (taken at a science themed birthday party) but we know he was using his imagination, being creative and having fun.

#NationalCreativityDay
#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 https://t.co/QrmnwZODOe

#sudepawareness
#SUDEP

[The Mark Shaparin Foundation @markshaparinfdn]

75% of seats sold!
Get your tickets now.

The Mark Shaparin Foundation presents:

Movie Night in NYC featuring “Under the Lights”

Tickets are on sale now for an advance screening with Filmmaker Miles Levin in Person!

Join us for this special event in New York City on Sunday, June 7th 2026.

We will begin with a short-film, “Informed Silence” by Director Spencer Choice.

Then we will watch the full-length feature film “Under the Lights” by Director Miles Levin.

The Directors of both films will be in person for the screening and Q&A. Miles will be offering free signed “Under the Lights” posters and a photo opportunity.   Sips and snacks provided (Wine, Beer, Light Food).

We would like to thank UCB for their generous support as the Lead Sponsor of this event as well as our community supporters Paul’s Purple Warriors, Milo&Me, Joanna Sophia Foundation and Epilepsy Services of New Jersey.

https://t.co/uoInCVzt85

#underthelights
#epilepsy
#epilepsyawareness
#seizures
#sudep
@markshaparinfdn
@warriors_paul
@EpilepsyNJ
@milesdlevin
@UCBUSA

[The Mark Shaparin Foundation @markshaparinfdn]

A fews weeks ago, we were in Orlando, Florida, visiting Mark’s favorite place, Disney World, for the inaugural Epilepsy Awareness Day in Disney World.

Between a third and half of the conference goers we spoke with had actually heard about SUDEP before. Unfortunately, almost all of them learned about it from social media and/or other nonprofit foundations; not from their doctor.  

We, at The Mark Shaparin Foundation believe that the primary source of all medical information patients receive should come from their doctor.  Patients should be learning about seizure safety and SUDEP from their doctor at the time of diagnosis and at every subsequent visit.  This is how we will normalize this vitally important conversation. #talkaboutsudepeveryvisit

We just confirmed our spot at the 14th Annual Epilepsy Awareness Day in Disneyland.  See you all in November!

Support our efforts to #endtheSUDEPsecret
at https://t.co/QrmnwZODOe

#SUDEP
#sudepawareness
#markshouldstillbehere
@AmericaEpilepsy
@EpilepsyAFLA

[The Mark Shaparin Foundation @markshaparinfdn]

Last month, we tabled at the Profound Autism Summit in Boston, Massachusetts. There, we spoke with families, caregivers and various healthcare providers of patients with profound autism. Many of these patients also have epilepsy. However, very few of the people we met knew about Sudden Unexpected Death in Epilepsy (SUDEP). Between 20% and 40% of patients with autism are also diagnosed with epilepsy and up to 60% of patients with autism have irregular EEG findings, even if they’re not having seizures.

Most people and most healthcare providers, do not know about SUDEP or the link between epilepsy and autism. The Mark Shaparin Foundation is committed to #endtheSUDEPsecret in all patient populations, especially the most vulnerable patient populations.

Special thank you to our ambassador Ana Clara Tolentino for her support at this event.

Learn more and consider making a donation to our life-saving mission at https://t.co/QrmnwZODOe

@profoundautism
@profoundautismsummit
#autism
#profoundautism
#sudepawareness
#SUDEP

[The Mark Shaparin Foundation @markshaparinfdn]

Secure your spot today!
Going fast: 2/3 of tickets are sold.

The Mark Shaparin Foundation presents:

Movie Night in NYC featuring “Under the Lights”

Tickets are on sale now for an advance screening with Filmmaker Miles Levin in Person!

Join us for this special event in New York City on Sunday, June 7th 2026.

We will begin with a short-film, “Informed Silence” by Director Spencer Choice.

Then we will watch the full-length feature film “Under the Lights” by Director Miles Levin.

The Directors of both films will be in person for the screening and Q&A. Miles will be offering free signed “Under the Lights” posters and a photo opportunity.   Sips and snacks provided (Wine, Beer, Light Food).

We would like to thank UCB for their generous support as the Lead Sponsor of this event as well as our community supporters Paul’s Purple Warriors, Milo&Me and Joanna Sophia Foundation.

https://t.co/uoInCVA0XD

#underthelights
#epilepsy
#epilepsyawareness
#seizures
#sudep
@markshaparinfdn
@warriors_paul
@UCBUSA

[The Mark Shaparin Foundation @markshaparinfdn]

Sunitha accepted The Mark Shaparin Foundation Ramen Challenge to increase awareness about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP).

Who is next to accept the ramen challenge?

#slurpforseizuresafety
#ramenchallenge
#EndTheSUDEPSecret
#SUDEPAwareness
#epilepsyawareness
@markshaparinfdn

[The Mark Shaparin Foundation @markshaparinfdn]

More than 50% gone in less than a week!
Grab your spot before it’s too late.

The Mark Shaparin Foundation presents:

Movie Night in NYC featuring “Under the Lights”

Tickets are on sale now for an advance screening with Filmmaker Miles Levin in Person!

Join us for this special event in New York City on Sunday, June 7th 2026.

We will begin with a short-film, “Informed Silence” by Director Spencer Choice.

Then we will watch the full-length feature film “Under the Lights” by Director Miles Levin.

The Directors of both films will be in person for the screening and Q&A. Miles will be offering free signed “Under the Lights” posters and a photo opportunity.   Sips and snacks provided (Wine, Beer, Light Food).

We would like to thank UCB for their generous support as the Lead Sponsor of this event as well as our community supporters Paul’s Purple Warriors and Milo&Me.

https://t.co/uoInCVzt85

#underthelights
#epilepsy
#epilepsyawareness
#seizures
#sudep
@underthelightsfilm
@markshaparinfdn
@warriors_paul
@milesdlevin
@UCBUSA

[The Mark Shaparin Foundation @markshaparinfdn]

To #endtheSUDEPsecret for good, it is important that future doctors are educated about Sudden Unexpected Death in Epilepsy (SUDEP) and the profound and devastating effects of grief on a family and throughout the community.

This is why last week we were honored to accept an invitation to give a lecture to the Student Interest Group in Neurology (SIGN) at New York Medical College. The medical students in attendance asked thoughtful and insightful questions about Mark, SUDEP and grief. It was a meaningful evening. We truly believe that the students in attendance, many of which will become future neurologists, will #talkaboutsudepeveryvisit

The evening was completed with a ramen dinner in honor of this year’s #ramemchallenge

Learn more and support our efforts to educate the entire medical community about SUDEP risk factors and prevention at https://t.co/QrmnwZODOe

#epilepsyawareness
#sudepawareness

[The Mark Shaparin Foundation @markshaparinfdn]

Teresa accepted The Mark Shaparin Foundation Ramen Challenge to increase awareness about Epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP).

Who is next to accept the ramen challenge?

#slurpforseizuresafety
#ramenchallenge
#EndTheSUDEPSecret
#SUDEPAwareness
#epilepsyawareness
@markshaparinfdn
@EpiWatchApp

[The Mark Shaparin Foundation @markshaparinfdn]

Over 1/3 of tickets sold in just 3 days!
Get one before it sells out.

The Mark Shaparin Foundation presents:

Movie Night in NYC featuring “Under the Lights”

Tickets are on sale now for an advance screening with Filmmaker Miles Levin in Person!

Join us for this special event in New York City on Sunday, June 7th 2026.

We will begin with a short-film “Informed Silence” by Director Spencer Choice.

Then we will watch the full-length feature film “Under the Lights” by Director Miles Levin.

The Directors of both films will be in person for the screening and Q&A. Miles will be offering free signed “Under the Lights” posters and a photo opportunity.   Sips and snacks provided (Wine, Beer, Light Food).

We would like to thank UCB for their generous support as the Lead Sponsor of this event as well as our community supporters Paul’s Purple Warriors and Milo&Me.

https://t.co/uoInCVzt85

https://t.co/2DZGbDfKcc

#underthelights
#epilepsy
#epilepsyawareness
#seizures
#sudep
@underthelightsfilm
@markshaparinfdn

[The Mark Shaparin Foundation @markshaparinfdn]

The American Academy of Neurology is updating their Sudden Unexpected Death in Epilepsy (SUDEP) Practice Guidelines.

Please join us in commenting during the open public comment period until May 12, 2026.

https://t.co/TyQgGPZpgO

The Mark Shaparin Foundation is committed to #EndTheSUDEPsecret and ensure that all neurologists and epileptologists #TalkAboutSUDEPeveryVisit

Learn more and support our life saving work at
https://t.co/QrmnwZODOe

#SUDEP
#SUDEPAwareness
#markshouldstillbehere

@AANmember
@AmEpilepsySoc
@ChildNeuroSoc
@Child_Neurology
@EpilepsyFdn
@AmericaEpilepsy
@LGS_Foundation
@curedravet
@CureEpilepsy
@SudepAction

[The Mark Shaparin Foundation @markshaparinfdn]

Please join us for a special event in New York City on Sunday, June 7th 2026, 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! (Please use link)

We will begin with a short-film, “Informed Silence” by Director Spencer Choice. “Informed Silence” is a documentary introducing Mark, a vibrant and dynamic 10 year old boy who passed away from Sudden Unexpected Death in Epilepsy (SUDEP) and unveils the profound loss and trauma his shattered family and community continue to experience.

Then we will watch the full-length feature film “Under the Lights” by Director Miles Levin. “Under the Lights” is a ground breaking feature film about belonging and the universal truth that everyone has a silent struggle.  A teenager risks everything for one unforgettable shot at prom, first love, and the kind of trouble that might finally make him feel normal, even if his epilepsy turns that night into a dangerous gamble.  Featuring Nick Offerman, Lake Bell, Mark Duplass, Randall Park, and Marin Hinkle, “Under the Lights” is the first movie of its kind to bring epilepsy into sharp focus.

The Directors of both films will be in person for the screening and Q&A. Miles will be offering free signed “Under the Lights” posters and a photo opportunity.   Sips and snacks provided (Wine, Beer, Light Food).

We would like to thank UCB for their generous support as the Lead Sponsor of this event.

#underthelights
#epilepsy
#epilepsyawareness
#seizures
#sudep
@UCBUSA