How You Can Help

The International SCN8A 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, advancing the International SCN8A Registry which is producing novel information about SCN8A and helping families with critical information, resources and support. 

Thank you for your continued support.

If you’d like to volunteer and join in our efforts to accelerate progress and engage families, please complete the brief form below and we’ll connect through your preferred channel.

Want to Volunteer your time and talents?

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. Please  fill out the volunteer form above and we will be in touch!

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

Through February 2023, choosing the International SCN8A Alliance for your Amazon shopping is a no cost way to get a small contribution every time you shop at 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. Please  fill out the volunteer form above and we will be in touch!

We meet every week with families to share updates, discover insights about the genetics of SCN8A, exchange information and share knowledge about the resources available. 

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 this form and we will be in touch to explore how you can help our community and children.

Participate

Share

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! Tag us too – @SCN8AAlliance

Facebook
Instagram
Twitter
LinkedIn

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 along with a bit about your child HERE.

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.

Join our private Facebook group for families. 

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

Follow our public Facebook page to stay updated.

Connect

Support Research

The International SCN8A Registry is always ready to capture your data! Your participation, whether completing the registry for the first time or updating previous information, is vital to the advancement of SCN8A research and treatment. 

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

We’re always looking for volunteers to help apply their passions to further the missions of the SCN8A Alliance. If you’re interested in giving your time, fill out this form and let us know how you’d like to help.

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

Have other ideas or want to discuss how you can get more engaged? Fill out this brief form and we will be in touch.

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