Dr. Michael Hammer's SCN8A Registry
The SCN8A Registry is live -- check it out!
The Cute Syndrome Foundation, together with partners SCN8A - Help Adeline Find Answers (run by our SCN8A advisor Juliann Bradish) and Wishes for Elliott, raised $20,000 to fund the first ever SCN8A Epilepsy research grant!
The tremendous generosity of the family and friends of those living with SCN8A Epilepsy - ranging from $10 to a $10,000 matching grant - made this grant possible. Every dollar we raised helped us meet our goal and makes an impact toward improving the pace of SCN8A research and toward providing hope to the individuals with SCN8A and their loved ones. Thank you everyone who participated, whether through donating, sharing the fundraiser, and/or by asking your friends and family to participate.
We are very pleased to provide a $20,000 grant to support the groundbreaking registry and interactive SCN8A website being developed at the University of Arizona under the dedicated efforts of Dr. Michael Hammer. The goal of the project is to make available important information about the clinical features, causes, and treatments of SCN8A epileptic encephalopathy to families, doctors, and researchers. The website will house and curate information on clinical variability, genetic variants, anti-epileptic drugs, and current research findings associated with SCN8A epileptic encephalopathy. The grant will also support assistance for families compiling the vital but complex data for inclusion in the database. We look forward to keeping all of you up to date on the project as it continues to develop.
We would like to thank all of the researchers who helped advise us on the grant, especially Dr. Miriam Meisler and Prof. Ingrid Scheffer. And, finally, we would like to thank Dr. Michael Hammer for his tireless work in memory of his daughter Shay. Without Dr. Hammer and Shay none of this would be possible.
The tremendous generosity of the family and friends of those living with SCN8A Epilepsy - ranging from $10 to a $10,000 matching grant - made this grant possible. Every dollar we raised helped us meet our goal and makes an impact toward improving the pace of SCN8A research and toward providing hope to the individuals with SCN8A and their loved ones. Thank you everyone who participated, whether through donating, sharing the fundraiser, and/or by asking your friends and family to participate.
We are very pleased to provide a $20,000 grant to support the groundbreaking registry and interactive SCN8A website being developed at the University of Arizona under the dedicated efforts of Dr. Michael Hammer. The goal of the project is to make available important information about the clinical features, causes, and treatments of SCN8A epileptic encephalopathy to families, doctors, and researchers. The website will house and curate information on clinical variability, genetic variants, anti-epileptic drugs, and current research findings associated with SCN8A epileptic encephalopathy. The grant will also support assistance for families compiling the vital but complex data for inclusion in the database. We look forward to keeping all of you up to date on the project as it continues to develop.
We would like to thank all of the researchers who helped advise us on the grant, especially Dr. Miriam Meisler and Prof. Ingrid Scheffer. And, finally, we would like to thank Dr. Michael Hammer for his tireless work in memory of his daughter Shay. Without Dr. Hammer and Shay none of this would be possible.
|
|
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
Our tax identification number is: 46-2699066. © The Cute Syndrome Foundation, All rights reserved
|
