News

Wave of Hope Fundraiser

September 22, 2023

Amber and Haley, are two young, inspiring women who have an extremely rare metabolic disease called Succinic Semialdehyde Dehydrogenase Deficiency (SSADH); there are only 400 cases of SSADH worldwide. Amber…

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Voice of the Patient Report Submitted to FDA

May 5, 2023

We are happy that after hosting the Externally Led Patient-Focused Drug Development (EL-PFDD) meeting, in July of 2022, the Voice of the Patient report has been submitted to the FDA’s…

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Conquering a rare metabolic condition: A family, a pediatrician, and two labs join forces

May 2, 2023

Boston Children’s Hospital and Dr. Phil Pearl, have long been at the center or our mission to find a treatment for SSADH Deficiency. Pearl teamed up with Mike Gibson, PhD.…

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Long-Term Funding Agreement for Maintaining Biorepository

March 28, 2023

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…

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Mouse Model Funding Grant Awarded

March 28, 2023

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…

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MGH update from Dr. Pearl and Carolyn Hoffman

March 28, 2023

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…

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Celebrating Dr. Mike Gibson’s Retirement

December 14, 2022

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…

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Dr. Lee Presents at 2022 AES Annual Meeting

December 14, 2022

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…

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Fund Raiser for SSADH Deficiency

October 21, 2022

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…

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SSADH EL-PFDD Meeting Proceedings  

July 13, 2022

Over a hundred patients, caregivers and doctors gathered from across the US, and from as far away as Asia, Europe and Greece to participate in the Externally Led – Patient…

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