What to Expect When Considering a Clinical Trial: Clinical Research 101
Thinking about participating in a clinical trial, but not sure what it really means for your child and your family?
From Advocacy to Action: SCN2A Now Has Its Own ICD-10 Code
The FamilieSCN2A Foundation is thrilled to announce that advocacy efforts with the CDC over the last four years have resulted
What Baby KJ’s Breakthrough Means to Us
Town Hall Presentation by Shawn Egan, PhD and CSO, which is recorded here: Click Here There is excitement in the rare
AES 2024 Recap: Collaboration, Innovation, and Progress in Epilepsy Research
The 2024 American Epilepsy Society (AES) Annual Meeting was a dynamic gathering of clinicians, researchers, advocates, and caregivers committed to
Everlee’s Story: A Family’s Journey of Strength, Love, and Hope
The story of Everlee Robles is one of strength, love, and the unbreakable bond that holds a family together in
The FamilieSCN2A Research Roundtable: A Family Perspective
Our family first found out about our daughter Adeline’s SCN2A diagnosis in an online message. The message had been sitting
Promising Initial Relutrigine (Prax-562) Clinical Data
We will be hosting a SCN2A families only Town Hall this Thursday, 9/5/2024 at 12:00PM EST where we will be
Positive Step Towards a Treatment for SCN2A Gain-of-Function Patients
Encouraging Initial Clinical Data for Praxis’ PRAX-222 in SCN2A Gain-of-Function DEEFirst in-human data for PRAX-222, an antisense oligonucleotide (ASO) in
Building Towards A Cure: 2022
With International SCN2A Awareness Day fast approaching, we are reflecting on the progress made last year and turning our attention
Not So Happy Holidays
During the holiday season leading up to Eliana’s birth, I can remember that excited feeling of knowing that from this