SCN8A Regional, Variant and Language
Family Networks

We are progressively developing networks of families, by geographic regions, and genetic variants and languages, around the world – coming together to learn about genetics and contribute to accelerating treatments for our children.

These groups are run by two SCN8A parents: Dr. Michael Hammer, father to Shay and discoverer of SCN8A as pathogenic for epilepsy in humans in 2012 and Gabrielle Conecker, mother to Elliott and Co-Founder of Wishes for Elliott.

The mission of our partnership is to bring families together with a wide range of stakeholders to better understand the genetics behind SCN8A and to collaborate towards finding a cure.

Regional Networks

Southeast Group

We meet in January, April, July, and October.

Join the Southeast group which includes Florida, Georgia, South Carolina, Alabama, Mississippi, and Tennessee!

Northeast Group

We meet in January, April, July, and October.

Join the Northeast group which includes Connecticut, Maine, Massachusetts, New Hampshire, New York, Rhode Island, Vermont, and Eastern Canada

Upper Midwest Group

We meet in March, June, September, and December. 

Join the Upper Midwest group which includes Illinois, Indiana, Michigan, Ohio, Wisconsin, Kentucky, Minnesota, Iowa, and Central Canada

Lower Midwest Group

We meet in March, June, September, and December. 

Join the Lower Midwest group which includes Arkansas, Kansas, Louisiana, Missouri, Oklahoma, Texas, and New Mexico.

West Coast US Group

We meet in March, June, September, and December.

Join the West Coast US group which includes California, Nevada, Idaho, Utah, Arizona, Oregon, Washington, and Western Canada.

MidEast Coast US Group

We meet in January, April, July, and October.

Join the MidEast Coast US group which includes Pennsylvania, West Virginia, Virginia, North Carolina, Washington D.C., Delaware, Maryland, and New Jersey.

Mountain Group

We meet in January, April, July, and October.

Join the Mountain group which includes South Dakota, Colorado, Nebraska, Wyoming, Montanna, North Dakota, and Utah. 

UK Group

We meet in February, May, August, and November.

Join the UK group which includes England, Scotland, Wales, and Northern Ireland.

Language Networks

Nos reunimos en enero, abril, julio y octubre.

¡Únase en este grupo para hablar con otras familias y escuchar lo que estamos aprendiendo sobre SCN8A, en español!

Nos reunimos em março, junho, setembro e dezembro.  

Junte-se este grupo para conversar com outras famílias e ouvir o que estamos aprehdendo sobre o SCN8A, en português!

Variant Networks

850 Group

We meet in February, May, August, and November.

Join the 850 group!

1872 Group

We meet in February, May, August, and November.

Join the 1872 group!

Fast Inactivation Group

We meet in February, May, August, and November.

Join the Fast Inactivation group! 

Loss of Function Group

We meet in March, June, September, and December.

Join the Loss of Function group! 

Part of our mission is to learn as much about SCN8A as we can. Among other things, we use these meetings to learn from you, as citizen scientists.

Much of what we discuss comes from what we’ve learned from the dedicated SCN8A Registry operated by Dr. Michael Hammer. The data from the registry is playing a critical role in helping bring new SCN8A targeted treatments to our children.

The more you share, the more we learn!