Transforming SCN8A

Last day to DOUBLE YOUR DONATION & fuel vital research!

We’re at $14K of our $20K goal

Last day to DOUBLE YOUR DONATION & fuel vital research!
We’re at $14K of our $20K goal

These funds will drive breakthroughs in SCN8A research as we work hard, collaborating for a cure.

A Lifeline of SCN8A Data

The SCN8A Registry, established in 2016, is the single largest source of caregiver-reported SCN8A data. It’s the only one of its kind for SCN8A, driving insights that shape care and research.

Set a Standard For Care

In 2024, we published the first-ever global Consensus on the Diagnosis & Treatment of SCN8A—a groundbreaking achievement for a disorder with fewer than 1,000 known cases. Now, we’re working to ensure that every doctor treating SCN8A is well-informed about the consensus.

Drive Global Collaboration

The SCN8A Research Roadmap unites families, researchers, and clinicians from around the world, prioritizing the needs and perspectives of families to drive progress and advance solutions for SCN8A. This initiative was recently honored with the prestigious CZI Rare As One grant.

Give SCN8A Families Hope

Through regular SCN8A Family Meetings, led by SCN8A pioneer Dr. Michael Hammer, we provide families with the latest research updates, vital resources, and a supportive community to help navigate their journey with SCN8A.

SCN8A Giving Page

With just a couple clicks, create a peer-to-peer fundraising page, engage your share your unique story.

On Instagram

Share your story, add a fundraiser, and watch the support grow! This 37-second video explains each step.

On Facebook

Quickly set up your own Facebook fundraiser and share it with your network to maximize your impact.

Using our sample campaign resources can help you stay organized and make the most of the weeks ahead. Sharing your fundraiser regularly and explaining why it’s important to you can help more people connect with your story and be inspired to get involved. Taking the time to send a quick thank-you, reply, or follow-up is a thoughtful way to turn interest into meaningful support while building stronger connections to the cause. Let’s do this!

Ready-to-Use Fundraising Templates

We’ve created template materials to make it easy for you to make an impact. Whether you’re part of an SCN8A family or a friend who wants to support, we’ve got you covered.

For SCN8A Families: Access customizable emails and social media templates to share your story and inspire others to join our cause.

For Friends and Supporters: If you’re part of our broader community, we have customizable email and social media templates that make it simple to raise awareness and encourage donations.

Because of support from individuals and our industry partners, we are able to bring life changing information directly to SCN8A families.

SCN8A Family Meetings provide a place for families to connect, share tactics and strategies, and ask questions directly to renowned geneticist Dr. Michael Hammer.