Engaging and Educating the Community

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 Join us in room 301 at the Baltimore Convention Center in Baltimore, Maryland, on December 11, 2019, for the first ever KCNT1 Epilepsy conference.  Presenters Dr. David Bearden, Dr. Leonard Kaczmarek and Dr. Steven Petrou will discuss the latest developments in KCNT1 Epilepsy research. 


Doors will open at 8:00am for sign-in and a light breakfast.   Programming will begin at 9:00am with a brief introduction from Seth Greenblott on behalf of the Foundation followed by presentations from our panel.  The event will close with a luncheon for participants from 12:00pm to 1:30pm.  The Conference will be recorded and made available for video replay for those who can't attend.


 Registration is now open and will close November 1, 2019.  Please register via email to seth@kcnt1epilepsy.org by providing the name, address, email and phone number for the registrants. Registration is free, but participants are responsible for their own lodging and travel expenses.  


      

Supporting Clinical Research

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 We are proud to support the clinical research efforts of Boston Children’s Hospital.  Following in the footsteps of their groundbreaking work treating another rare genetic disorder, the team at  BCH's Division of Genetics and Genomics, the Department of Neurology, and the Manton Center for Orphan Disease Research are actively developing a new class of patient-specific drugs aimed at blocking the expression of the genetic mutations that cause KCNT1 Epilepsy. 


With proper funding, it may be possible to have a treatment available for the initial clinical trial patients soon.


The Foundation intends to be a long-term funding partner to ensure that this type of patient-specific treatment can be developed for every child that suffers from KCNT1 Epilepsy. 

Information for Parents and Physicians

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Working with clinicians, researchers and families, we provide regularly updated information about KCNT1 Epilepsy on our website.  We hope this serves as an empowering resource for parents and loved ones trying to understand this complex disease, and aids in better more informed conversations between doctors and patient families.