It Takes a Village

by Michelle Lewis

After Eliana was born, we spent five months in the NICU of our local children’s hospital. I quickly realized how isolating our new journey was going to be. Research has shown that people who have unique experiences tend to report less positive feelings and a sense of exclusion compared to those who ...

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Expanded Access Programs, What You Need to Know

by Shawn Egan, PhD, BOD FamilieSCN2A Foundation

Expanded Access Program May Offer Drug Access to SCN2A Kiddos Prior to a Potential Drug Approval – Praxis has disclosed that they will be opening an Expanded ...

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Why I Study SCN2A

by Michael Coulter, MD, PhD

I’m a neuroscience postdoctoral researcher in the lab of Loren Frank at UCSF. I’m fascinated by Scn2a because I want to understand the mechanism of Scn2a loss of function disorder and develop new treatments. During my MD/PHD training, I studied genetic causes of autism spectrum ...

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Decisions, Decisions, Decisions

by Michelle Lewis, FamilieSCN2A Foundation Vice President

As a parent of a non-verbal, non-ambulatory child I am forced to make decisions for her on a daily basis—what clothes will she wear, when and with what toys will she play, and the list ...

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Three SCN2A programs in development and their CIITIZEN partnership

by Shawn Egan, Ph.D. (parent to a child with SCN2A-DEE and extensive experience as a Biotech Equity Research Analyst)

Praxis Precision Medicines, Inc updated our SCN2A community on the status of their three SCN2A programs in development and ...

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Finding Your Voice

by Michelle Lewis, FamilieSCN2A Foundation Vice President

On a cold January morning during the first week of what, unbeknownst to me, would become a 5 month long stay at our local children’s hospital NICU, I was holding my daughter when I noticed......

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Our goal is to find a cure!

Did you or your child just receive a new diagnosis of SCN2A? If so, please know you are not alone!