How to Help

The Alliance is committed to raising funds to advance research, support families, and engage the community in awareness and advocacy. We are a driven, dedicated group of patient advocates and scientists committed to collaborating with all stakeholders to improving the lives of all affected by SCN8A.

Fundraising is a major lifeline of our organization. We rely on the generosity of others to provide the necessary funds to achieve our goals of helping families, facilitating research and creating awareness of SCN8A. We are forever grateful to those that spend their time and money to help our very worthy cause.

The Alliance and its founding partners – the Shay Emma Hammer Research Foundation and Wishes for Elliott – have an impressive record of using funds efficiently and effectively. We welcome donors or those raising funds to dedicate their contributions to various key goals: supporting new research, supporting the Registry, supporting families in need, and supporting regional networks. You can be confident that we will utilize the generous gifts we receive in the most cost-effective ways possible.

Thank you for your continued support.

To explore how you can join in our efforts to accelerate progress and engage families, please complete the brief form below – and we’ll connect through your preferred channel.

Fundraising

Your support matters! Donate Now  or write us to explore a grant earmarked to a specific program or in someone’s honor.

Run a race. Dedicate birthday, anniversary, or wedding gifts to SCN8A research. Organize a local event – they create lasting memories while raising funds. We are here to help!

Check if the company you work for has a matching gift program.  If they do, it doubles your contribution!  A matching gift is a donation, made by an employee to a not-for-profit organization, which is matched by a donation from their employer

Listing the 8AAlliance for your Amazon shopping is a no cost way to get a small contribution from Amazon to support SCN8A research.

Support our endowment fund which allow us to raise funds for long-term growth. Supporters may choose to donate through bequests (wills), life insurance, retirement plan beneficiary designations or trusts. Contact Gabi@SN8AAlliance.org to discuss.

Sign up to become a Family Partner of the SCN8A community HERE. Receive all updates on the progress of our 6th Registry drive as well as early reports of new findings as the data is collated and analyzed. As a Family Partner, you’ll receive regular information on all upcoming Alliance activities.

Alliance Regional SCN8A Family groups meet quarterly to share updates, discover insights about the genetics of SCN8A, exchange information on local doctors and therapy options, and share knowledge about the resources available in your state. In the future regions will begin having in person within the region offering educational programming and meetups for families.

Click HERE

Analyses of Registry data reveal many commonalities for those with the same variant location. Dr. Hammer meets quarterly with variant groups who not only share information and experiences but help outline new research hypotheses for further research.

Click HERE

Interested in getting involved in supporting the work of the Alliance in accelerating scientific progress and supporting families, but not sure where to start? Curious as to how your skills and strengths can be used to make a positive impact on the work of the Alliance to accelerate research and support an informed and activist community.

Volunteering is an easy way to get connected with a wide variety of opportunities within the Alliance and our partnerships with clinicians, researchers, and industry.

Complete the form below and we can explore how you could help our community and children.

Participate

Share

As we all know, new, and younger children are being diagnosed all the time. Share your advice in a 2-5 minute video or a 5-100 word message. What do you wish you knew when you first got your diagnosis? What reflections can you share on this distinct journey? Submit your advice HERE and be sure to include your name, email, your child’s name and age, and ideally a picture of your child.

If you would like your child’s story to be added to our page of SCN8A Stories, you can submit your child’s story and photo HERE

Follow us and share our posts on social media to help raise awareness of SCN8A and related epilepsies.

Include all SM links!

WE have a dense website with lots of information – but the focus and urgency of our work really comes alive with photos of the children we fight for. We would love to include photos of your children – if you’re interested, consider sharing a mix – the good times, the tough times, family time, exciting milestones.

The Alliance hosts a private support for parents sharing an interest in learning more about the science of SCN8A and accelerating progress towards new treatments. on FB. Connect with other families from around the world and benefit from updates by Dr. Hammer on ongoing research.

Link to private page

Share updates/ Ask questions. Celebrate milestones. Keep updated on upcoming events.

Link to public group

Connect

Support Research

The 2021 International SCN8A Registry drive has begun and we need you! Your participation, whether completing the registry for the first time or updating previous information, is vital to the advancement of SCN8A research and treatment. Check out a brief video by Dr. Hammer about the Registry HERE!

Stay informed about upcoming clinical trials. Get in-depth background on the compounds coming to trials soon. Learn more about Clinical Trials.

Click HERE

Volunteer Form

The Alliance reserves the right to dismiss any volunteer whose actions do not reflect our needs, mission, or values.