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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

2019 Chip for Charity

October 2, 2019

We want to thank all those who participated in the 21st Annual Chip for Charity golf outing. Those of you who were able to join us know that we didn’t have our usual great weather, and even though it was misty, foggy and rather chilly, it didn’t keep anyone away.
We are grateful to each of you for your involvement in making the outing another huge success. It is because of your generosity that we were able to raise over $100,000 this year, pushing the cumulative total over $1.5 million.

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Dried Bloodspots Facilitates SSADH Newborn Detection

August 1, 2019

Gamma-Hydroxybutyrate Content in Dried Bloodspots Facilitates Newborn Detection of Succinic Semialdehyde Dehydrogenase Deficiency. Further, development of a first-tier screening method…

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Phillip L. Pearl, MD

Dr. Pearl Joins NORD Board of Directors

July 23, 2019

Washington, DC, July 19, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25…

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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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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
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