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Positive Step Towards a Treatment for SCN2A Gain-of-Function Patients

First in-human data for PRAX-222, an antisense oligonucleotide (ASO) in development for SCN2A gain-of-function was reported during a Praxis R&D day ...

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Building Towards A Cure: 2022

by Angie Auldridge

With International SCN2A Awareness Day fast approaching, we are reflecting on the progress made last year and turning our attention to the new year filled with hope and possibility. Despite the challenges of 2021, the FamilieSCN2A Foundation thrived ...

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Not So Happy Holidays

by Michelle Lewis

During the holiday season leading up to Eliana’s birth, I can remember that excited feeling of knowing that from this point forward, the holidays were going to be so much different. They would now include playing in the snow, baking cookies and candies ...

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Industry Relations Updates

by Shawn Egan, PhD, BOD FamilieSCN2A Foundation

Longboard Pharmaceuticals plans to initiate a phase 1b/2a* clinical study for their drug LP352 sometime between January 1st and March 31 of 2022. This will be a basket study (enrolling many different Developmental ...

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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 ...

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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!