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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Inducible SSADH Mouse Model

December 17, 2020

In early 2020, Drs. Rotenberg and Lee from Boston Children’s Hospital were given a one year $100,000 grant to create an additional SSADH Deficient mouse model.  The goal of this project was to allow researchers to turn on and off the gene mutation that causes SSADH at different stages of…

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SSADH Consortium (SDIC)

October 20, 2020

The SSADH Virtual Conference was held on July 9 and 10, 2020. The top SSADH researchers and clinicians from around the world shared updates for medical professionals and patient families. Over 300 attendees registered, representing 25 countries and every continent. The proceedings from the event will be published as a…

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