Kayven’s Helping Hands

06/24/2026

Please take a moment to support the National Plan for Epilepsy. It is long overdue. This legislation would create a coordinated national strategy to improve epilepsy research, care, treatment, and outcomes for the more than 3 million Americans living with epilepsy.

Many major diseases, including Alzheimer’s, HIV/AIDS, cancer, Parkinson’s disease, and ALS, already have national plans or strategies to improve care, research, education, and outcomes. Yet despite affecting millions of Americans, epilepsy still lacks a coordinated national plan.

Epilepsy can affect anyone, at any age, yet stigma remains high and education remains limited. Families deserve complete, transparent information so they can make informed decisions and better protect their loved ones.

Knowledge may not change every outcome, but it can ease the burden of wondering what you didn’t know.

Please take a few minutes to contact your members of Congress and ask them to support the National Plan for Epilepsy Act.

🔗 Learn more at https://www.epilepsy-national-plan.org/

It’s time for epilepsy to receive the same national attention and commitment as other major health conditions.

06/24/2026

Please take a moment to support the National Plan for Epilepsy. It is long overdue.

Many major diseases, including Alzheimer’s, HIV/AIDS, cancer, Parkinson’s disease, and autism, already have national plans or strategies to improve care, research, education, and outcomes. Yet despite affecting millions of Americans, epilepsy still lacks a coordinated national plan.

Epilepsy can affect anyone, at any age, yet stigma remains high and education remains limited. Families deserve complete, transparent information so they can make informed decisions and better protect their loved ones.

We are not fighting against medical professionals. We want to be true partners in care—equipped with all the information needed to understand risks, treatment options, and outcomes.

Knowledge may not change every outcome, but it can ease the burden of wondering what you didn’t know.

It’s time for epilepsy to receive the same national attention and commitment as other major health conditions.

The Danny Did Foundation is proud to stand alongside epilepsy organizations across the country in support of the bipartisan Act (S. 494 / H.R. 1189).

This legislation would create a coordinated national strategy to improve epilepsy research, care, treatment, and outcomes for the more than 3 million Americans living with epilepsy.

Alzheimer’s, AUTISM, Parkinson’s, and ALS all have National Plans. Epilepsy DOES NOT.

📣 As we work to get this legislation passed - your voice matters!

Please take a few minutes to contact your members of Congress and ask them to support the National Plan for Epilepsy Act.

🔗 Learn more at https://www.epilepsy-national-plan.org/

06/23/2026

06/23/2026

Today is International Dravet Syndrome Awareness Day 💜

Dravet syndrome is a rare, severe form of epilepsy that begins in infancy and can involve frequent, prolonged seizures, developmental delays, and lifelong medical challenges. Families affected by Dravet syndrome show extraordinary resilience as they navigate complex care needs every day.

This day is about:
💜 Raising awareness of Dravet syndrome and epilepsy
🧠 Supporting research toward better treatments and improved quality of life
🤝 Standing with patients, caregivers, and the global advocacy community
📣 Making rare and severe epilepsies visible and understood

Learn more from the Dravet Syndrome Foundation: https://dravetfoundation.org/today-is-dravet-syndrome-awareness-day/

Awareness leads to understanding. Understanding leads to better care, stronger support, and real progress. 💜

06/23/2026

📚 Join Kayven’s Helping Hands this weekend at the Parenting Resource Fair at the Oaklawn Activity Center!

We’ll be there sharing free children’s books, epilepsy education materials, family resources, and books designed to help kids understand epilepsy and seizures. Whether you’re looking for support, information, or just a great new book for your child, we’d love to meet you!

At Kayven’s Helping Hands, we’re passionate about connecting families with resources, education, and support while helping children build a love of reading.

Stop by our table, say hello, and learn more about the programs and resources available to families in our community. We hope to see you there! 💜📖🦆

06/21/2026

Today is SYNGAP1 Awareness Day 💜

SYNGAP1-related disorders are rare genetic conditions that can cause epilepsy, developmental delays, and challenges with learning, communication, and behavior. Families affected by SYNGAP1 often navigate complex medical journeys with extraordinary strength, resilience, and advocacy every day.

This day is about:
💜 Raising awareness of SYNGAP1 and epilepsy
🧠 Supporting research toward better treatments and, one day, a cure
🤝 Standing with individuals, caregivers, and the global SYNGAP1 community
📣 Making rare neurodevelopmental conditions visible and understood

Join the movement and learn more about SYNGAP Awareness Day and Splash for Syngap Cure Syngap1:
https://curesyngap1.org/calendar/syngap-awareness-day-2026-splash-for-syngap/

Awareness is how progress begins, and every voice helps move the science forward. 💜

06/20/2026

We are honored to be part of Dilly’s Place Family Fun Day today! 💜

We’re here sharing free books, epilepsy education, and resources with families of children of all ages who have additional needs. Events like this remind us how important community, inclusion, and support are for families navigating unique challenges.

If you’re attending, be sure to stop by and say hello! We’d love to meet you and share a book or resource with your family.

Dilly's Place

📚🦆💜

06/18/2026

Thank you to Yokohama Ramen Izakaya in Wichita for helping spread awareness of the The Mark Shaparin Foundation Ramen Challenge and the importance of seizure safety and SUDEP awareness. We appreciate community partners who help educate others and support families impacted by epilepsy. 💜🍜

And if you haven’t tried their ramen yet, we highly recommend checking them out! While you’re there, consider posting your own ramen photo in support of the Mark Shaparin Foundation’s Ramen Challenge and help spread awareness of SUDEP and epilepsy.

06/18/2026

💜 Introducing Kayven's Care Kits 💜

Receiving an epilepsy diagnosis or experiencing a seizure can be overwhelming for both children and their families. That's why Kayven's Helping Hands created Kayven's Care Kits—to provide comfort, support, education, and a few smiles during a difficult time.

Each kit includes:
🦆 A KHH Comfort Duck
🥋 Epilepsy Warrior headband
🏅 Certificate, bookmark, sticker, and Ninja book
🎨 KHH coloring book
📝 Helpful tips for hospital visits and EEG testing
📖 Great Katie Kate Learns Epilepsy book
🧩 Activities to help keep boredom away, including a mini LEGO set

The kit also includes an epilepsy education folder filled with resources for caregivers, including information about seizures, seizure first aid, alert devices, support organizations, and other tools to help families navigate this diagnosis.

As an added resource, we can also provide a fun animal-themed EEG hat for children who may struggle with EEG wires and glue. These soft, comfortable hats help make testing a little less scary and can serve as a fun distraction during the EEG process.

If you know a child or family who could benefit from a Kayven's Care Kit, please have them fill out our request form. Together, we can help families feel a little less alone on their epilepsy journey. 💜

Request form: https://form.jotform.com/260704458424053