SCN8A Clinicians Network

The FAST network—a partnership between Wishes for Elliott and the Shay Emma Hammer Research Foundation—along with Children's National, has launched this initiative bringing leading clinicians who are actively caring for SCN8A patients. The initial objective is to collaborate on development of a consensus of Standard of Care (SoC) for SCN8A. With nearly 400 patients worldwide, and rapidly growing, our children will benefit from these clinicians working to use data from the longitudinal SCN8A Registry and their clinical records to outline treatment protocols for kids based on the very diverse presentations. Read our blog post with a synopsis of the first meeting and next steps.

The following slides were prepared and presented at the first meeting in November 2020 by JayEtta Hecker, Executive Director of Wishes for Elliott. The slides were based off of a survey run through a survey completed by 40+ caregivers that was posted on the FAST (Families Advancing SCN8A Treatments) Facebook group and through unstructured interviews with families on our FAST Regional Network calls.

 

© 2020 by Wishes for Elliott

 

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