SCN8A The Cute Syndrome Foundation

SCN8A The Cute Syndrome Foundation If you or a loved one has received an SCN8A diagnosis, you are not alone! Send us a message or visit thecutesyndrome.com/join-our-scn8a-community to join.

The Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the families around the world who are affected by SCN8A-related disorders. The Cute Syndrome is a 501(c)(3) public charity dedicated to funding research for and raising awareness of rare disorders like SCN8A Epilepsy and PCDH19 Epilepsy. Join our internation

al support group to connect with other families, stay up to date on clinical trial and research study information, and find caregiver support resources. This group is open to patients, parents, and direct caregivers of those with SCN8A mutations.

As the school year draws to a close, we'd love to celebrate the achievements of our SCN8A community. Whether it was a f...
05/29/2026

As the school year draws to a close, we'd love to celebrate the achievements of our SCN8A community. Whether it was a first day of kindergarten, learning a new skill, making a new friend, attending a special event, winning an award, reaching an IEP goal, or graduating, every milestone deserves to be celebrated!

What was a special milestone, achievement, or favorite memory from this school year? Share in the comments!

Join The Cute Syndrome Foundation tomorrow for Transitioning Into Summer: Helping Kids Thrive at Home, a webinar designe...
05/27/2026

Join The Cute Syndrome Foundation tomorrow for Transitioning Into Summer: Helping Kids Thrive at Home, a webinar designed to help families feel more prepared and supported as they navigate the shift into summer routines. Featuring Teena Mehta Aziz, Registered Behavior Analyst (RBA), and three SCN8A parents, this conversation will offer practical tools and with real-life strategies to help make summer transitions smoother for neurodiverse children and young adults who thrive on routine.

🔗 Register: https://us02web.zoom.us/meeting/register/oC1UU7drRhmPFflEDOZ9VQ

Last week, Danielle Hayward, interim executive director, and Shelley Frappier, director of patient engagement and data m...
05/26/2026

Last week, Danielle Hayward, interim executive director, and Shelley Frappier, director of patient engagement and data management, attended the RARE Advocate Development (RAD) Brain Workshop on behalf of The Cute Syndrome Foundation. We’re incredibly grateful for the opportunity to learn from leading experts, researchers, and fellow rare disease advocates who are all working to accelerate therapies for rare neurological conditions. It was also wonderful to connect with our founder and board president, Hillary Savoie, PhD, of Neurvati Neurosciences, who delivered the Day 2 keynote with Bruce Leuchter, M.D., of Neurvati Neurosciences.

A special thank you to Global Genes, the Rare Epilepsy Network: REN, and Mahzi Therapeutics for organizing such a meaningful and collaborative event. It was an inspiring few days filled with learning, connection, and hope for the future of rare disease research and treatment.

Are you interested in connecting with other SCN8A families in your region? TCSF would love to help! The Cute Connections...
05/22/2026

Are you interested in connecting with other SCN8A families in your region? TCSF would love to help! The Cute Connections Grant Program allows SCN8A families to organize local meetups and social gatherings. Meetups can be as simple as a picnic in the park or as special as an aquarium visit, water park day, or adaptive activity. You organize the event, we'll help fund it!

💜Apply today at thecutesyndrome.com/cuteconnectionsgrant

The SCN8A community is at a loss as we share the passing of Levi, age 11, of Michigan (USA). Please keep his family in y...
05/22/2026

The SCN8A community is at a loss as we share the passing of Levi, age 11, of Michigan (USA). Please keep his family in your thoughts during this difficult time. As a community, we promise to always fight in your honor, Levi. 💜

The SCN8A community is at a loss as we share the passing of Amelia, age 6, of Arkansas (USA). Please keep her family in ...
05/21/2026

The SCN8A community is at a loss as we share the passing of Amelia, age 6, of Arkansas (USA). Please keep her family in your thoughts during this difficult time. As a community, we promise to always fight in your honor, Amelia. 💜

May is National Speech-Language-Hearing Month. In the SCN8A community, communication may look different for every indivi...
05/18/2026

May is National Speech-Language-Hearing Month. In the SCN8A community, communication may look different for every individual. SCN8A warriors may use spoken words, sounds, signs, facial expressions, augmentative and alternative communication (AAC), or many other ways to express themselves.

This month, we recognize that all forms of communication are meaningful, as well as honor the speech-language pathologists, audiologists, educators, therapists, and families who support each individual’s communication journey. 💜

A recent UK study found that epilepsy caregivers experience elevated rates of depression, anxiety, and sleep disturbance...
05/12/2026

A recent UK study found that epilepsy caregivers experience elevated rates of depression, anxiety, and sleep disturbances. This Mental Health Awareness Month, we want to remind SCN8A caregivers that you are not alone. TCSF offers resources to help you care for yourself while caring for your loved one.

- Watch self-care and stress management webinars in our video library under the Families tab at thecutesyndrome.com.
- Join monthly virtual groups like Coffee & Chit Chat and TCSF Book Club to connect with others who understand.
- Explore family support resources at thecutesyndrome.com/resources, or email [email protected] if you need help finding the right support.
- Connect in our private Facebook support group, open to parents, legal guardians, and SCN8A patients.

Not sure where to start? Send us a message. We're here for you. 💜

(If you or someone you know is experiencing a mental health crisis, call or text 988 in the United States, or contact your local emergency services or crisis hotline internationally.)

Progress for SCN8A families can’t happen one day a year. That’s why monthly giving matters. During Monthly Giving Awaren...
05/11/2026

Progress for SCN8A families can’t happen one day a year. That’s why monthly giving matters.

During Monthly Giving Awareness Week, we’re inviting our community to become recurring supporters of The Cute Syndrome Foundation. Your monthly gift helps create dependable funding for:
- Research initiatives
- Family support
- Education & awareness
- Advocacy for the SCN8A community

Consistent giving helps us plan bigger, reach farther, and support families all year long. Join us in creating lasting impact, one month at a time.

💜 Set up your monthly giving plan at thecutesyndrome.com/donate

Celebrating Motherhood in the SCN8A Community: SCN8A Warriors Julia and Magnolia"Being a mom means being a light to my d...
05/10/2026

Celebrating Motherhood in the SCN8A Community: SCN8A Warriors Julia and Magnolia

"Being a mom means being a light to my daughter Magnolia in a world of darkness. On her darkest moments she looks up to me. She says I’m her hero and queen.

Although both Magnolia and I have SCN8A, we are different yet very similar. I was diagnosed when Magnolia was in 2022 right after her autism diagnosis. Since then we have learned so much, and seen how much she truly struggles and how much she has been loved on through this community. She is also the funniest little girl and such a little warrior and fighter.

Being her mom is the best but hardest job I have ever been given. I am her mom, her hero, and her caretaker sometimes all within a few minutes of each other. Both of us have seizures, autism and she has hypotonia, a feeding tube, hypertonia, and other medical issues but she is so strong, as am I. Dealing with SCN8A as a adult is very hard in general. It’s hard to take care of myself and her. I mostly prioritize Magnolia but I’m learning I have to take care of me to take care of my girl."

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