Programs
The FamilieSCN2A Foundation provides a variety of programs to support the needs of the SCN2A community.
Global Family Support Network
The Global SCN2A Support Network is a private Facebook group established by the FamilieSCN2A Foundation for parents, caregivers, patients, and families of children with SCN2A-related disorders. The purpose of the group is to create a community where affected families can go for support and guidance from others in similar circumstances. (If you are not on Facebook, but still want to connect, please contact us and sign up for the newsletter to stay informed.)
Warrior Wednesday
Inspired by the strength of Amelia Weaver, Warrior Wednesday is a special tradition at the FamilieSCN2A Foundation. This program celebrates the resilience and courage of individuals in our community. Each week, we randomly select a Warrior to highlight on our Social Media Pages, shining a light on them and bringing a little brightness to everyone's day. Warrior Wednesdays remind us of the strength within the SCN2A community, encouraging us all to "Fight On" as we share and celebrate each Warrior’s journey.
The hashtags we use are: #CureSCN2A #SCN2AWarriorWednesday #SCN2A
If you are interested in learning more or would like your Warrior to be featured, please reach out to our Program Manager, Amanda Gale:
SuperSibs Club
This club is committed to creating support for the siblings of those with SCN2A-related disorders. SuperSibs of all ages can connect with others like themselves throughout the year. Stay tuned for communications on upcoming events, creative projects, helpful resources, and giveaways!
Brooks's Birthday Club!
Brooks’s Birthday Club is in memory of Brooks Thomas Richter who gained his angel wings on his 3rd Birthday. Brooks was a true warrior who loved birthdays although he only was on earth for three. He loved being surrounded by his family and friends; and we loved celebrating what an amazing, strong, and resilient boy he was. Our hope is to provide a smile to the warrior receiving the birthday surprise and to know that they are loved fiercely by so many.
— The Richter Family
Your child will receive a birthday card on their birthday and possibly even a little something extra! Also, with your permission, we will do a special shout-out posting on social media for their birthday.
Patient Assistance
Grant Program
Raising a child is expensive but raising a child with special medical needs is VERY expensive and we would like to help.
The FamilieSCN2A Foundation sets aside a limited amount of funds each year to offer small grants to patients with SCN2A-related disorders for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs.
This program opens each year on International SCN2A Awareness Day, February 24, to all patients worldwide who meet the requirements. The program closes each year on December 1st or when funds are depleted, whichever comes first. Any remaining funds are rolled over to the next year.
SCN2A Family Event Grant
There is no greater feeling than to be with people who understand you. The purpose of this grant is to bring SCN2A families together to cultivate a strong community and deepen supportive relationships. This program gives ownership to families, allowing them to create and coordinate an SCN2A Family Event of their choosing with financial support from The FamilieSCN2A Foundation.
Caregivers Connection
While our Town Hall gatherings focus on updates in research and treatment pipelines for the SCN2A community, our Caregivers Connection provides a supportive space specifically for parents and caregivers of a loved one with an SCN2A-related disorder. This program offers an opportunity to share both hardships and successes, celebrate the inchstones, and promote self-care for those juggling multiple "hats". We’re excited to offer this new program and would love to hear how we can best support you and your family.
Discover Our Events
In addition to these programs, The FamilieSCN2A Foundation hosts and encourages the community to participate in special events throughout the year.