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 29th 2022 – October 1st 2022 We are pleased to announce that the conference on rare neurotransmitter diseases will take place…

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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 unmet needs of patients YONGIN, SOUTH KOREA & AUSTIN, TX, USA, 19 July 2021 – GC Pharma (006280.KS)and Speragen, Inc.…

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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 Replacement Therapy for SSADH patients. The grant period will begin July 1st and run for six months to evaluate the optimal…

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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” under the guidance of Dr. Petrine Wellendorph, an international leader in the neuroscience community related to GHB/GABA research.  The funds will…

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$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 05/31/23.  This end date coincides with the current end date of the Natural History Study. The Biorepository is storing all…

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Celebrating Rare Disease Day

February 27, 2021

Celebrating Rare Disease Day 2021! On February 25th, Washington State University (WSU) took the time to recognize Rare Disease Day.  The McConnell family put together a video sharing some insight as to how a rare disease impacts a family. We are grateful to the team at WSU for their continued support…

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