News

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.…

Read More

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…

Read More

NINDS Awards two year grant: ERT for SSADH Deficiency

January 11, 2022

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 More

Proceedings Published from Virtual Conference

December 14, 2021

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 More

Wave of Hope

December 11, 2021

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 More

Conference on Rare Neurotransmitter Diseases

December 4, 2021

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…

Read More

GC Pharma and Speragen Announce Joint Development of SSADHD Enzyme Replacement Therapy and License Agreement of the patent of SSADH Protein generation plasmid

July 20, 2021

GC Pharma and Speragen Announce Joint Development of SSADHD EnzymeReplacement Therapy and License Agreement of the patent of SSADH Proteingeneration plasmid Collaboration to focus on developing First-in-Class drug to fulfill…

Read More

The SSADH Association awarded $55,000 to Henry Lee, Ph.D

July 6, 2021

The SSADH Association awarded $55,000 to Henry Lee, Ph.D., Alexander Rotenberg, Ph.D., MD, and Phil Pearl, MD from Boston Children’s Hospital / Harvard Medical School to continue evaluating the potential for Enzyme…

Read More

SSADH Fellowship Grant Awarded to Dr. Jens Andersen at the University of Copenhagen, Denmark

July 6, 2021

The SSADH Association committed $50,000 for a fellowship program with Dr. Jens Andersen at the University of Copenhagen, Denmark to evaluate the “Molecular Pathological Mechanisms of CaMK2a in SSADH Deficiency”…

Read More

$100,000 Awarded to WSU

May 26, 2021

The amount of $100,000 was awarded to Drs. Gibson and Roullet at Washington State University to extend the initial funding of the SSADH Biorepository for the period of 10/01/21 to…

Read More