One by One
The Cute Syndrome Foundation, Recipient

The Cute Syndrome Foundation

Ozark, Missouri

Support for families impacted by rare condition

Worldwide, an estimated 1,000 people are known to be living with SCN8A-related disorders. These rare disorders are caused by a mutation in the SCN8A gene, which affects how brain cells send signals. SCN8A—as the condition is often known—can lead to epilepsy that starts in infancy and can be difficult to manage. Many children also experience developmental delays, low muscle tone, or movement issues, but symptoms can look very different from child to child.

The Cute Syndrome Foundation is a nonprofit dedicated to growing awareness of SCN8A, raising funds for research related to care and treatment, and helping families affected by the rare genetic mutation. It connects parents with support groups, provides education and shares helpful resources to navigate obstacles that come with a diagnosis. While the organization is headquartered in Ozark, Missouri, it unites families across the globe.

Gathering for learning and connection

For more than a decade, The Cute Syndrome Foundation has hosted a SCN8A Clinician, Research and Family Gathering, held in conjunction with the American Epilepsy Society Annual Meeting. Each year, the conference is held in a new city, bringing together experts and families for two days of education and connection.

In 2025, the event was hosted in Atlanta, which welcomed about 40 families impacted by SCN8A. It provided an opportunity for families to come together, be around others who can relate to their experiences, and swap stories and insights.

Promotional conference gifts share the love

A one by one grant provided plush dogs that were given as conference gifts to make younger attendees feel welcome, ease any stress that comes with a public event and give them a keepsake to remember the experience. “We wanted to do something really special to treat the kids and to make them feel loved, appreciated and seen,” said Danielle Hayward, director of development and communications. “That’s both the ‘SCN8A warriors,’ as we call them, and their siblings. Their siblings are warriors in their own right.”

Welcome packages containing the plush dogs were handed out at the start of the conference. The items were chosen because dogs play an important role in the SCN8A community. Support dogs—commonly present for children living with the condition—were at the conference to help soothe those who attended.

A note from Cheryl

While SCN8A might be a rare medical condition, The Cute Syndrome Foundation is committed to helping those affected feel connected and supported. We were humbled to provide conference gifts that add something special to its annual event. If you’re interested in a one by one grant, visit onebyone.4imprint.com.

For more information about The Cute Syndrome Foundation, please visit https://www.thecutesyndrome.com/

To Top