What is SCN8A?

SCN8A-related disorders are rare genetic neurological conditions that can cause epilepsy, developmental delays, movement and communication challenges, and other complex medical needs. Symptoms vary widely, but for many individuals and families, SCN8A affects nearly every part of daily life.

About The Cute Syndrome Foundation

The Cute Syndrome Foundation is dedicated to improving the lives of individuals and families affected by SCN8A-related disorders. We support families, advance research, provide education and resources, and bring together families, clinicians, researchers, and industry partners to build a stronger SCN8A community and work toward better treatments and outcomes.

Annual SCN8A Gathering

The Annual SCN8A Gathering brings families and professionals together to learn, connect, and share advances in SCN8A research and care. For many SCN8A patients and caregivers, it is the highlight of their year and a rare opportunity to build community and spend time with others who truly understand life with SCN8A.

Your Gift Can Make a Difference

Your support helps The Cute Syndrome Foundation provide meaningful programs and resources for SCN8A families, bring our community together, and advance progress toward a better future.

$250 | Support a Family’s Journey
Help offset travel and lodging costs for an SCN8A family attending the Annual Gathering.

$500 | Celebrate Our Volunteers
Support a year of appreciation for the dedicated volunteers who give their time and talents to the SCN8A community.

$1,000 | Bring SCN8A Families Together
Fund a Cute Connections meetup, giving families the opportunity to meet and build relationships with others who understand life with SCN8A.

$2,000 | Help a Family Attend the Annual Gathering
Fund approximately one family travel grant to help offset the costs of travel and lodging for an SCN8A family attending the Annual SCN8A Clinician, Researcher, and Family Gathering. Travel grants average approximately $2,000 per family.

$3,000 | Welcome Families to the Annual Gathering
Support welcome bags for families attending the Annual Gathering, including thoughtful items and resources to help make their experience special.

$4,000 | Create Meaningful Family Experiences
Support family activities at the Annual Gathering that give families opportunities to connect, spend time together, and build lasting relationships.

$5,000 | Bring More Families to the Annual Gathering
Help fund travel grants for approximately 2–3 SCN8A families, reducing the financial barriers that can make attending the Annual Gathering difficult. Travel grants average approximately $2,000 per family.

$7,500 | Support a Year of Family Engagement & Education
Help provide year-round opportunities for SCN8A families to connect, learn, access valuable resources, and engage directly with experts and one another.

$10,000+ | Invest in the Future of the SCN8A Community
Make a significant investment in TCSF’s mission, helping us strengthen family support, expand education and engagement, advance SCN8A research, and respond to the evolving needs of our community.

Additional Ways to Make an Impact

Bereaved Family Remembrance | $40 per family
Honor the memory of a child with SCN8A who has passed away by providing a special remembrance ornament to their family.

Advance SCN8A Research | Any Amount
Support TCSF’s broader efforts to advance SCN8A research through research funding, collaboration, patient engagement, data initiatives, and other efforts that move the field forward.

Gift amounts reflect approximate program costs and are intended to illustrate the impact of your support. Unless otherwise designated and accepted by TCSF, donations support the organization’s overall charitable mission and may be used where they are needed most.

Building a Brighter Future for SCN8A Families

Pitino Family Fundraiser for The Cute Syndrome Foundation