Posts by Carolyn Hoffman
Celebrating Dr. Mike Gibson’s Retirement
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…
Read MoreDr. Lee Presents at 2022 AES Annual Meeting
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…
Read MoreFund Raiser for SSADH Deficiency
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…
Read MoreSSADH EL-PFDD Meeting Proceedings
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…
Read MoreEL-PFDD Meeting
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.…
Read MoreJournal of Child Neurology Special Issue:
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…
Read MoreNINDS Awards two year grant: ERT for SSADH Deficiency
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…
Read MoreProceedings Published from Virtual Conference
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…
Read MoreWave of Hope
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…
Read MoreConference on Rare Neurotransmitter Diseases
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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