What is Dravet Syndrome?

Dravet Syndrome is sometimes referred to as severe myoclonic epilepsy of infancy (SMEI). It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5.

According to the Dravet Foundation, “Dravet syndrome is an intractable developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating symptom burden that significantly impacts individuals throughout their lifetime. Dravet syndrome is a rare disease, with an estimated incidence of 1:15,700. The majority of patients carry a mutation in the sodium channel gene SCN1A.”

Children with Dravet Syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.

What can you do?

Seizures in Dravet Syndrome are difficult to control, but can be reduced by anticonvulsant drugs. A ketogenic diet, high in fats and low in carbohydrates, can also help. For more on the Ketogenic Diet and how it is being applied read the story from the New York Times called Epilepsy’s Big Fat Miracle or if you don’t have a NYTimes subscription, here is a link to open access info: https://pmc.ncbi.nlm.nih.gov/articles/PMC3662214/

What can happen?

As children with Dravet Syndrome get older, their decline in cognitive function stabilizes, and in many, it improves slightly. However, most teenagers with Dravet Syndrome are dependent on caregivers.

What research is being done?

Study of the genetics associated with Dravet Syndrome and related disorders is being conducted and is expected to lead to the development of effective therapies. For details on how the $14 Million in research funding has been spent by the Dravet Syndrome Foundation visit: https://dravetfoundation.org/dsf-funded-research/

For more information on Dravet Syndrome

For more information on Dravet Syndrome here are some resources:
http://www.ice-epilepsy.org/dravet-syndrome
http://www.dravetfoundation.org/

“Laughing, Loving, Kissing and Hugging….”

You don’t hear that so much from other dads, but you say these words quite a bit! You wouldn’t have expected such uplifting warm words to come from a tough guy dad whose son is diagnosed with cerebral palsy and a severe seizure disorder, named Lennox-Gastaut Syndrome. Early on when I was pregnant with our first child our dreams of our future with our kids played out much differently. You’ve told me your dreams involved father and son fishing trips, hiking trips to the mountains, baseball practice and games and all that kind of manly stuff. You grew up this way, and frankly neither of us knew life any other way, until the day Andrew was born.

Instead of dwelling on the “normal” child we lost, you focused on the perfect child that was now a part of our life. Andrew required extra care, but that didn’t stop you from focusing on bringing out Andrew’s smile and his laugh. Remember how you would bounce Andrew on our couch until he giggled out of control, and when you massaged his belly after his bath so he would gleefully yell, “EEEEEE!!” Hearing Andrew’s laugh and seeing him smile made all of his difficulties non-existent just for those moments in time. We all needed that. When Andrew was three we took hiking trips even though Andrew could not walk himself. I’ll never forget how you carried Andrew up the Jenny Lake Trail in the Grand Teton Mountains so that Andrew could feel the mountain air and see the tallest trees all for himself. Even though you were exhausted, what was important to you was that we were all together doing our favorite things no matter what obstacle was in our way. Not every dad takes his young son for walks, around and around, up and down hills in the neighborhood for hours just because his son liked the sensation to just keep on moving. Every summer there is no doubt that Andrew will be playing on the beach with his cousins. You wouldn’t have it any other way. You push that awkward wheelchair in the blazing sun through the deep sand just to get him there. Andrew may not play baseball, but you do make time for him to roll on his ball, one of his favorite things. Did you know you had such strength, did you know you had that kind of love inside for somebody else? You do, and you are the best dad.

Dad’s Dedication

Your dedication isn’t only to Andrew and our girls, but to me as well. You have given me the greatest support over these past 16 years. You are always available to listen and stand behind any decisions I make. For those scariest of times such as hospital stays when we are the most consumed with worry you hold down the fort at home so that I can be where I want to be, by Drew’s side. Our date nights are simple. They consist of hamburgers and a movie on a late Friday night, every single Friday night, and I wouldn’t have it any other way. We have made this time for each other because we know having this time helps us to be better parents. You make sure I have time away with my friends whether it is for a lunch date or a weekend getaway. I know taking care of four children by yourself is overwhelming, but you don’t complain.

Andrew’s daily seizures are our biggest worry. That worry is with us no matter where we are. I know it’s hard for you to grasp that religiously giving medicines several times a day have little to no impact on the daily seizures that are interfering with our son’s brain. It is so difficult to not be able to help Andrew, when he needs help the most. I know you wish there was more we could do to help him. I wish that too. You fix everything, but somehow we can’t stop Drew’s seizures. You don’t let the unpredictability of these diseases get in the way of the love you have for your family, especially for your son. That is to be commended.

Happy Father’s Day

Happy Father’s Day to you Dave, and also to all the great dads like you who put their child with special needs first. You are great dads, the best of them all. Here’s to even more laughing, loving, kissing and hugging!

This post was written by Rachel Ablondi, who lives in Mount Airy, Maryland with her husband Dave. They are parents to Andrew who lives with Lennox-Gastaut syndrome, Amelia, Ava and Jenna. 

Sponsored by SK Life Science, Inc.

Living with epilepsy is a deeply personal journey that can change not only how you see yourself, but how you connect with others. For Jason Raether, a middle school nurse in Sioux Falls, SD, his diagnosis didn’t stop him from caring for others—it deepened his empathy and strengthened his commitment to educating those around him.

From Diagnosis to Clarity

Jason has spent the past 25 years practicing as a nurse, and today he serves as the school nurse for a bustling middle school of more than 750 students. However, in 2010, he found himself on the other side of patient care when he experienced his first seizure in front of his wife.

After being rushed to the hospital, and performing various testing, an EEG confirmed that Jason had epilepsy. He immediately began anti-seizure medication, determined to manage his condition and get back to caring for others.

However, as months passed, his seizures persisted. By 2011, he had increased his medication dosage, hoping for better results. Instead, he found himself feeling disoriented. “I just felt like I was in a daze,” Jason recalls. “I was functioning, but I wasn’t really present.”

That changed when he met a new neurologist who recognized that Jason’s body may have become too used to his current medication. Together, they explored other options and decided to try XCOPRI® (cenobamate tablets) CV, a prescription medication approved for the treatment of partial-onset seizures in adults 18 and older.

Jason began his transition to XCOPRI and he felt an immediate difference. “The transition was easy, and I haven’t had any seizures since starting XCOPRI,” he shares. “I also feel like I have more clarity now that I am taking a lower dosage and less medication overall.”

Like any medication, XCOPRI has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.

These are not all of XCOPRI’s side effects. We encourage you to read the Important safety information included at the end of this article.

Finding Strength Through Empathy

Jason’s work as a nurse has always been rooted in compassion. But since his diagnosis, he’s found a deeper purpose in connecting with students and families who face similar challenges.

At his middle school, Jason not only provides medical support, he also teaches staff members how to respond when a student experiences a seizure. When students come to him scared or embarrassed about their epilepsy, he offers understanding words that few others can.

“I tell them, ‘I was in your shoes about six months ago,’” he said. “My seizures look the same as yours.”

That honesty brings comfort to his students and confidence to their parents. “When I tell them that I also have epilepsy, I see the relief in their faces,” he says. “They know I understand.”

Spreading Awareness and Breaking Stigma

Jason’s passion for advocacy was ignited when he attended an epilepsy awareness walk in Florida. Seeing others have seizures in real time—surrounded by compassion instead of fear—opened his eyes to the power of community and understanding.

“That day, I knew I wanted to be more involved,” he says. “I wanted to help care for people with epilepsy and eliminate the stigma that still exists.”

For Jason, every day at school is another opportunity to lead with empathy, educate others, and remind those with epilepsy that they’re not alone. His journey from patient to advocate shows how understanding your own challenges can inspire hope—and healing—in others.

For more information on XCOPRI, visit www.xcopri.com.

IMPORTANT SAFETY INFORMATION and INDICATION for XCOPRI® (cenobamate tablets) CV

DO NOT TAKE XCOPRI IF YOU:

• Are allergic to cenobamate or any of the other ingredients in XCOPRI.
• Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart.

XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:

Allergic reactions: XCOPRI can cause serious or life threatening skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.

QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting.

Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood.

Liver problems: XCOPRI may cause liver problems. Your healthcare provider will do blood tests to check your liver before you start XCOPRI and while you take XCOPRI if needed. Tell your healthcare provider right away if you have any symptoms of liver problems, such as: yellowing of the skin and eyes (jaundice), nausea, vomiting, unusual darkening of the urine, or feeling tired or weak.

Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.

Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.

DISCONTINUATION:

Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus).

DRUG INTERACTIONS:

XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.

PREGNANCY AND LACTATION:

XCOPRI may cause your birth control medicine to be less effective. Talk to your healthcare provider about the best birth control method to use.

Talk to your healthcare provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org.

Talk to your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI.

COMMON SIDE EFFECTS:

The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired.

These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch.

DRUG ABUSE:

XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law.

INDICATION:

XCOPRI is a prescription medicine used to treat partial-onset seizures in adults.

Please see additional patient information in the Medication Guide. This information does not take the place of talking with your healthcare provider about your condition or your treatment.

Hope you all are having a wonderful holiday season and are leaning into your mindfulness and gratitude skills to help with your epilepsy. As we head into the new year I wanted to share some tips on how your seizure triggers can help guide your New Year’s Resolutions.

Resolutions: Looking Forward and Back

This is the time of the year when we all want to set intentions for the year ahead and we hope to positively evaluate things in our lives that have gone past. A friend let me know that one of the things she does each year is to look her seizure triggers and try and create a plan of action in order to avoid those triggers. I thought this might be a helpful exercise to add in to you resolutions or vision board or manifestations or whatever it is that you do at this time of year.

Take our survey

What are seizure triggers?

According to the National Epilepsy Foundation, some of the most commonly reported seizure triggers include lack of sleep, sickness with or without a fever, flashing lights, stress, drug or alcohol use, menstrual cycle, unmaintained blood sugars, and missing medications. My friend’s seizure triggers include stress, lack of sleep, and diet.

Stress

When it comes to  stress, my friend has begun a yoga practice. This can be done at home or in a yoga studio, whichever works for you. I also have done yoga over the years. This is a great way to work meditation into your day. It can give you a few minutes to stop, calm your breathing and focus on your body. I really encourage everyone to carve out a little time for some type of meditation or yoga.

Resolutions are great when you can measure them. Then they become goals instead of big ideas. You could set an intention to add yoga to your day 1 time a week for 10 minutes at home. I think you’ve earned 10 minutes of peace and quiet.

Lack of Sleep

Another trigger for my friend is sleep deprivation, and I would say this is true for lots of us. When she finds herself getting off her sleep schedule she will block off a day (or evening) to allow for some relaxation, watch television, have a hot bath, and head to bed at a decent time. Having a sleep or wind down routine can be helpful in making sure you get enough good quality sleep.

One idea here is to each month of the year add something new to your sleep schedule. Come next year you will have loads of gift ideas for your loved ones to make bedtime super cozy!

Not Eating Healthy

Finally, my friend reports diet can be a trigger. Honestly it can be tough to eat right for many reasons these days, one of which is money. But it is true that whole ingredients are better for us and diet plays a role in our health. Those of us living with epilepsy might find learning more about the Mediterranean diet or the Mind Diet would be useful.

As far as eating better resolutions go, small wins count. If you decide to make slight adjustments toward a healthier diet that counts as success.

What are your resolutions?

I hope that this helps you to setup your yearly goals and resolutions as much it has helped me. Can’t wait to hear more about your resolutions!!

Epilepsy Scholarship

If you are planning to take classes at a 2 or 4 year university or college or toward a trade or certification program in the fall of 2026, and are living with epilepsy you may be eligible for this scholarship.

Applications are accepted December 15, 2025 – March 6, 2026.

The Charles L. Shor Epilepsy Opportunity Fund

This scholarship provides direct financial assistance people with epilepsy attending universities, colleges, technical schools, technical training, and certification programs. The program was created to help individuals diagnosed with epilepsy to empower their future through education.

Take our Survey

Epilepsy Wellness Advocates

This program is offered through the team at Epilepsy Wellness Advocates. This organization aims to provide community & lifestyle resources, educational resources, and unwavering advocacy to those living with epilepsy, their caregivers, and families. Epilepsy Wellness Advocates is funded by the Charles L. Shor Foundation. Mr. Shor has battled epilepsy himself throughout his life and has generously donated millions to epilepsy research and other epilepsy efforts including this scholarship.

Epilepsy Scholarship FAQs

• Who is this for: This program is for people with epilepsy who are living in the United States who have not yet received a bachelor’s degree.
• Application Deadline: March 6, 2026 at 4pm EST
• Application Opens: December 15
• Award Selection & Interview Phase: March 9 to May 30
• Award Acknowledgement Period: June 1 to June 15
• Who administers the scholarship: The scholarship is administered by The Dayton Foundation.
• Does that mean only people in OH can apply: Nope anyone living with epilepsy who is living in the United States who has not yet received a bachelor’s degree can apply.

For more FAQs or to Apply visit:

Consider Applying

So if you are heading to school (or back to school) in the fall of 2026 consider applying for The Charles L. Shor Epilepsy Opportunity Fund. You may receive financial assistance to support your educational goals.