2016 Symposium Group photo

Making a Difference

The SSADH community is made up of families, scientists and doctors from around the world working together to make a better life for this very special patient population.

Our Mission

The SSADH Association is a voluntary, not-for-profit, 501(c) (3) organization dedicated to helping children and families affected by an ultra-rare neurometabolic disorder known as Succinic Semialdehyde Dehydrogenase Deficiency or SSADH.

The SSADH Association is committed to those affected with this neurotransmitter disease through education, advocacy and research.

News & Updates

International Study

May 29, 2019

We have the maximum number of patients that we need to visit Boston Children’s Hospital for the Natural History Study. …

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Natural History Study Starting

March 11, 2019

Sam kicked off the SSADH Natural History Study at Boston Children’s Hospital on March 6, 2019.  We found the study…

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Recruiting Patients

January 28, 2019

The Succinic Semialdehyde Dehydrogenase Deficiency (SSADH) Natural History Study Group of Drs. Gibson, Pearl, DiBacco, Krischer, Roullet, Opladen and Jeltsch,…

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Consider Enrollment in the iNTD

October 31, 2018

We are close to the beginning of an NIH-funded study that will carry out a 5-year Natural History of SSADH…

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The research team of Drs. Gibson and Roullet makes the news in the WSU Insider.  An article titled, Worldwide Rare Disease Study Led by WSU Researchers, by Judith Van Dongen, WSU Spokane Office of Research, talks about the grant received from the National Institute of Child Health and Human Development to conduct a natural history study for SSADH patients.

The article details the importance of the natural history study and explains how it will help the scientists identify specific biomarkers of disease severity and better predict the natural course of SSADH. Additionally, the article talks about the importance of the natural history study and explains how it will meet prerequisites for FDA approval of new drugs or existing drugs indicated for other conditions.

Click here to read the entire story.

Mike Gibson, far left, and Jean‑Baptiste Roullet (blue sweater) and their team of researchers in the WSU College of Pharmacy and Pharmaceutical Sciences.
(Photo by Cori Kogan, WSU Spokane)

For more information or to enroll in the study please email:
Study Coordinator:  Dr. Melissa DiBacco by email at: Melissa.Dibacco@childrens.harvard.edu
Study Coordinator:  Dr. Kathrin Jeltsch by email at: Kathrin.Jeltsch@med.uni-heidelberg.de

 

WSU Team Picture