We are thrilled to announce that the KCNT1 Epilepsy Foundation (KEF) has been selected to join the Chan Zuckerberg Initiative’s (CZI) Rare As One Network and has been awarded a multi-year grant! This incredible opportunity will help us build capacity, transition from a volunteer-driven organization and expand to include more experienced professionals, and advance our mission to drive research collaborations and support families affected by the KCNT1 gene mutation.

Co-founder, Justin West, his family, and Executive Director, Sarah Drislane were interviewed by the LA Times/Daily Pilot about the importance of funding rare disease research.

Shifra Wagner’s six-year-old son Chaim Eliyahu has been medically fragile since birth. She tells a story of powerful love, powerful emunah, and powerful determination as she fights to keep the precious neshamah she’s been entrusted with not just alive, but thriving

We're excited to announce our Million Dollar Bike Ride grant is being awarded to the University College London team including Dr Rajvinda Karda and Dr Ellie Chilcott and Anna Keegan. Other collaborators include Dr Juan Antonio, Dr Amy McTague and Dr Gabriele Lignani. This marks a significant milestone in our journey to advance medical research for KCNT1-related disorders. They will be collaborating on a pioneering RNA editing treatment project.

You can find the Foundation slides here.

Arpin Strong’s board members were thrilled to host the organization’s largest fund-raising event on September 29 at the New England Country Club in Bellingham, MA.

Parents can keep up-to-date on some of the top news and studies.

Southern Company, Georgia Power Environmental Affair’s team featured KCNT1 mom, Alex Wild, and her family’s quest to work with the foundation to raise money for research.

KCNT1 warrior Mom shares her story of searching for a diagnosis and how she is working with the Foundation to help advance research and develop new treatments.

ABC News/Channel 7Health Reporter, Denise Dador interviews two families in So Cal.