During this season of giving, we pause to reflect on the losses our SCN2A community has felt this past year. It is unknown exactly how many people in the world have SRDs, but we do know six children who have passed away in 2022. Countless others spent multiple days in the hospital. Some spent Christmas there. As we struggle to deal with the pain and grief, Foundation volunteer Tracy Umezu supports families during crisis and loss based on her own experience losing her daughter Charlotte. We are eternally grateful for Tracy's gift of giving back in this way.
It's a difficult subject to think about, but there is a great gift to be given as a life is lost. The FamilieSCN2A Foundation works with Autism Brain Net to facilitate the gift of brain tissue donation and make it available to SCN2A researchers. We are indebted to the Weaver Family, who advocated tirelessly for Amelia during her lifetime and continue to support SRD research as a way to honor her legacy. Please watch below as sister, Penelope, talks about Amelia and as Mom, Angie, discusses her family's decision to donate Amelia's brain tissue.
Thanks to you we have met our $30K year-end match!! And, we are at 75% of our GOAL to fund a $100,000 research grant for 2023. With your help we can fund critical research to one day eliminate the suffering of ALL those affected by SRDs. Please consider a year-end gift today. -The FamilieSCN2A Foundation Team