News
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…
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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…
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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…
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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…
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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.…
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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…
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Granted awarded for Developing an inducible mouse model for gene replacement therapy in Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD) Drs. Henry Lee and Alex Rotenberg of Boston Children’s Hospital were awarded…
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The manuscripts from the 2020 Virtual SSADH Conference are being published on-line through the Journal of Child Neurology. The majority of the topics are from the presentations, however when we…
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The Le Vine family held a Wave of Hope – SSADH Fall Harvest Beach fundraiser on Sunday, October 17 from 1 – 5 pm at the Columns Restaurant in Avon…
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Announcement and Invitation on behalf of Lil’ Brave One: Rare Neurotransmitter Diseases: from Novel Research to Focused Treatments through iNTD Network Strengthening and Patient Empowerment Save the date September…
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