NEWS
SSADHD Presentation at PAME
Charity Adams (Mom to Bond), Dr. Phil Pearl and Dr. Itay Tokatly Latz spoke at the 2024 PAME (Partners Against Morality in Epilepsy) event on December 5th in Los Angeles, CA.
Charity spoke of the ground breaking work that Bond (pictured below) participated in just months before his passing, during a visit to Boston Children’s Hospital, kicking off the five year SSADHD Natural History Study.

Dr. Pearl spoke about inherited inborn errors of metabolism and the elevated risk of SUDEP with uncontrollable seizures.
Dr. Latz wrapped up the session by outlining the details that have been learned about SSADHD from the Natural History Study, how the elevated levels of GABA drops as the patient’s age and how the brain down regulated to compensate for the elevated levels.
We are grateful to Charity, Dr. Pearl and Dr. Latz for giving a voice to the SSADH community and sharing what they know about SSADHD. We are also thankful to the organizers at PAME for including SSADHD in this year’s event.
PAME’s mission is to convene, educate and inspire all stakeholders – from the bereaved to those living with epilepsy, to health care professionals, advocates, clinical and basic scientists, and death investigators – to promote understanding and drive prevention of epilepsy-related mortality.
In the link below, Clarity begins her speech at 5:30 and Dr. Pearl and Dr. Latz start their talk at 40:00.
https://www.youtube.com/watch?v=52UdflQ_rDg&t=329s