Long-Term Funding Agreement for Maintaining Biorepository
In January of 2023, Brad and Carolyn Hoffman we were invited to sit in on a weekly neuroscience lab meeting with Alex Rotenberg’s MD, PhD and the team from Boston Children’s Hospital (BCH) / Harvard Medical School. It was beyond exciting to hear a dozen brilliant scientists talking about SSADH…
Read MoreMouse Model Funding Grant Awarded
The SSADH Association has granted the funding request from Dr. Henry Lee and Dr. Alex Rotenberg of Boston Children’s Hospital (BCH) / Harvard Medical School seeking nine month interim funding of $48,990 to keep the gene replacement therapy project on the SSADH inducible mouse model moving forward until their next…
Read MoreMGH update from Dr. Pearl and Carolyn Hoffman
On February 16, 2023, Dr. Phillip Pearl and Carolyn Hoffman spoke to a group of genetic counselors at Massachusetts General Hospital (MGH) regarding SSADH Deficiency. They were invited to speak on behalf of Rare New England, a nonprofit organization serving the rare disease community, whose mission is to bring together…
Read MoreCelebrating 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 40 years and we were honored to have the opportunity to express our gratitude for all that he has done…
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 Nashville, Tennessee. Dr. Lee is the Science Program Manager of the Preclinical Research for the RSZ Translational Neuroscience Center and…
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 years and five major hospitals and a final visit to Johns Hopkins in Baltimore, MD, in 1996 to identify that…
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