News
The manuscripts from the 2020 Virtual SSADH Conference are being published on-line through the Journal of Child Neurology. We are expecting to publish up to nine papers. The majority of the topics are from the presentations, however when we moved from an in-person to a virtual event we were forced to scale back and eliminate…
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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. today announced that they have…
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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 enzyme restoration parameters in the…
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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 also be used to support…
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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 the samples secured from the…
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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 of SSADH research and are…
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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 life. The doctors are reporting…
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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 supplement in the Journal of…
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The 22nd Annual Chip for Charity Golf Outing was help on September 10 in southern Wisconsin in honor of Sam Hoffman. Unfortunately, in addition to managing the challenges that came with the COVID Pandemic we also had less than perfect weather. However, regardless of the cold all day rain this didn’t dampen anyone’s commitment to…
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Mattie Jane has created a company called Busy Boxes to sell sensory playdough boxes. Each box contains her homemade, non-toxic, scented playdough and lots of themed items for hours of sensory fun! The goal of each box is to help children develop and improve their motor skills, encourage language and promote cognitive development. Not only…
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