Celebrating Dr. Mike Gibson’s Retirement

December 14, 2022

On December 9th we joined a handful of friends to celebrate Dr. Mike Gibson’s retirement dinner in Spokane, Washington. Dr. Gibson has been our beacon of hope for more than 40 years and we were honored to have the opportunity to express our gratitude for all that he has done…

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Dr. Lee Presents at 2022 AES Annual Meeting

December 14, 2022

Henry H. C. Lee, PhD, had the opportunity to present his very important work on SSADH Deficiency at the 2022 AES (American Epilepsy Society) Annual Meeting, December 2-6, 2022 in Nashville, Tennessee. Dr. Lee is the Science Program Manager of the Preclinical Research for the RSZ Translational Neuroscience Center and…

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Fund Raiser for SSADH Deficiency

October 21, 2022

Wave of Hope Benefit Fund Raiser for SSADH Deficiency in honor of Amber and Haley Le Vine, two young women diagnosed with SSADH (Succinic Semialdehyde Dehydrogenase Deficiency).  It took seven years and five major hospitals and a final visit to Johns Hopkins in Baltimore, MD, in 1996 to identify that…

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SSADH EL-PFDD Meeting Proceedings  

July 13, 2022

Over a hundred patients, caregivers and doctors gathered from across the US, and from as far away as Asia, Europe and Greece to participate in the Externally Led – Patient Focused Drug Development (EL-PFDD) meeting. Additionally, we had participants join us virtually who were unable to travel because of the…

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EL-PFDD Meeting

June 6, 2022

The Externally-Led Patient-Focused Drug Development (EL-PFDD) initiative was developed for the Food and Drug Administration (FDA) to systematically obtain the patient perspective on specific diseases and their currently available treatments. EL-PFDD meetings have a format designed to engage patients and elicit their perspectives on two topic areas; 1) the most…

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Journal of Child Neurology Special Issue:

January 11, 2022

2020 Conference Proceedings of the International SSADH Deficiency / Conference Organizers: Phillip L. Pearl, MD, Melissa L. DiBacco, MD, Jean-Baptiste Roullet, PhD, and K. Michael Gibson, PhD Given the exigencies of the COVID-19 pandemic that persisted throughout 2020 and well into 2021, the planned conference for physicians, investigators, and families…

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