One week only!
We are $30K short of our $80K Annual Campaign goal for our 8th year as a rare disease nonprofit.
BUT WAIT, a generous donor has offered to match the next $15K raised for a limited time only. We must reach the goal by May 12th!
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As we chart the course in 2023, we are excited at the growth of the Foundation's capacity to serve the SCN2A community, thanks in large part to CZI's Rare As One project. There are mixed emotions when a new family reaches out to us. While it's a difficult diagnosis to hear, we are grateful to have created a welcoming place for a family to come for support, education, and if they wish, involvement. It's imperative that we reach our Annual Campaign goal to sustain the operation of our mission to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders (SRD).
By donating today (and checking the box to make it monthly) you have the power to make our vision of a world with effective treatments and cures for ALL SRDs a reality FASTER, before another child is lost.
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DID YOU KNOW? When you donate on our website, it's easy to see if your employer will match your donation thanks to our partnership with Double the Donation.
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ICYMI: Watch and share our short documentary Why “Families” is part of our name: SCN2A-related disorders affect the entire family
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We are excited to host another fantastic conference! A detailed agenda will be coming soon. The reserved block of rooms at the hotel is almost sold out so register and book now if you think you are coming. If you change your mind, please let us know so we can offer your space to someone else. Online registration is also an option.
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30 Second Request For Support! IMPORTANT!
We are actively pursuing an ICD-10 code for SCN2A-related disorders in the US and are looking for names to add to our petition for support.
Establishment of an ICD-10 code for rare genetic epilepsies such as SCN2A would help to improve the accuracy of diagnosis and facilitate access to appropriate treatments and support services. It would also promote greater awareness and understanding of these disorders among healthcare professionals, policymakers, and the general public.
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Click here for more information on becoming a sponsor of the 2023 SCN2A Family and Professional Conference. We already have more than 250 attendees registered in person! Summer in Boston will be fun and expensive. We are grateful for all the support we have so far but need more sponsors to offset the costs of this critical gathering of the SCN2A community.
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POSTER SESSION! In an effort to facilitate the growth of SCN2A-related research networks and encourage early career researcher participation, the FamilieSCN2A Foundation is proud to offer the unique opportunity for presenters to share their current work to professionals. Abstracts must be submitted to
research@scn2a.org by
May 31, 2023, 11:59pm, in order to be considered.
Click here for details and scroll down to POSTER SESSION.
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Join us on the Million Dollar Bike Ride for Research!
The Orphan Disease Center at UPenn will match up to $30K to award an SCN2A research grant of $60K+!
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Executive Director, Leah Myers served on a panel kicking off the 2023
Global Genes Rare Drug Development Symposium in Philadelphia on May 2nd. She spoke passionately about how the SCN2A Clinical Trial Readiness Study data has catapulted our community towards developing novel therapeutics. Across town, Leah and other members of the FamilieSCN2A team were invited to hear about the amazing work being done on SCN2A by
Ingo Helbig's lab at the Children's Hospital of Philadelphia's Research Center.
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St. Jude's Pediatric Translational Neuroscience Initiative
We are honored that the FamilieSCN2A Foundation was invited to participate in the
St. Jude Children's Research Hospital Workshop called “Patient Advocacy and Community Engagement in the Advancement of Research for Catastrophic Pediatric Neurological Disorders.” Leah Myers is there to ensure SRDs are represented in this exciting new research initiative.
"No child should die in the dawn of life."_________________________________________________________________________________________________________________________________________________________________
Have you participated in research studies and are worried your data is being held in a silo, not being shared? In this
FREE webinar from our partners at
DEE-P Connections, you will learn about how the CRID can help eliminate data silos and get your data to more researchers faster. Get your
CRID today - it only takes 5 minutes!
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SCN2A TOWN HALL DATES LED BY SHAWN EGAN, PHD
May 13, 2023 09:00 PM
Jun 14, 2023 12:00 PM
Jul 15, 2023 11:00 AM
Aug 18, 2023 08:00 PM
Sep 15, 2023 06:00 PM
Oct 15, 2023 12:00 PM
Nov 15, 2023 06:00 PM
Times are all Eastern Standard. After registering, you will receive a confirmation email with the link to join.
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