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SCN8A and Infantile Spasms
June 17, 2023 @ 3:00 pm - 5:00 pm New York, NY
Join the team from the International SCN8A Alliance – Dr. Hammer, Gabi and JayEtta – as well as SCN8A mom, researcher and Board Member Madeleine Oudin, PhD for a discussion about Infantile Spasms (IS) in SCN8A. We will share some emerging research and learnings from our Registry, talk about what infantile spasms are (and are not), give some resources you can use to advocate for the best possible care and treatments for your children who have IS and hear from families who are in the throes of IS now, have struggled to get control or think they may be struggling with spasms. We’d love you to join to share your experiences, ask your questions and connect with other SCN8A families who get it.
Please register for this meeting in advance so we can gauge discussion and plan accordingly.
We would like to extend our thanks to Neurocrine Biosciences and Praxis Precision Medicines for their support of these meetings which bring improved quality of life to families and allows them opportunities to learn, connect, and contribute to the understanding of SCN8A.