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

Busy Boxes by Mattie Jane

July 22, 2020

Mattie Jane has created a company called Busy Boxes to sell sensory playdough boxes.  Each box contains her homemade, non-toxic,…

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22nd annual Chip for Charity

June 24, 2020

On September 10, 2020 the 22nd Annual Chip for Charity Golf Outing will be held at Kettle Hills Golf Course,…

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Announcing SSADH Conference

May 19, 2020

The SSADH Conference that was planned for Boston this July has been moved to a virtual format. The event will…

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Added Natural History Study Site Locations

January 9, 2020

We are pleased to announce that we have opened sites in Barcelona, Spain and Oslo and Gottingen, Germany for patients…

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The 2020 Virtual SSADH Conference held July 9 and 10, was made up of two half day events including formal presentations by outstanding clinicians and researchers in the field from around the world, allowing for a question and answer session at the end of each speaker.

The goal of the conference was to share updates from the on-going Natural History Study, encourage brainstorming between researchers and clinicians and discuss the best directions for future research moving forward. A portion of the agenda was devoted to update families and caregivers of SSADH patients.

The proceeding from this event will be published in the Journal of Child Neurology at a later date.  

Below are the links to the recording for each session.  The recordings will be available until August 1st, 2020. 
2020 SSADH Conference - Session 1
2020 SSADH Conference - Session 2
2020 SSADH Conference - Session 3
2020 SSADH Conference - Session 4

Conference Organizers:  Dr. Jean-Baptiste Roullet, Dr. K. Michael Gibson
Dr. Phillip Pearl, Dr. Melissa DiBacco, Alice McConnell, & Carolyn Hoffman


Conference Web Image 650