News

Celebrating Rare Disease Day

February 27, 2021

Celebrating Rare Disease Day 2021! On February 25th, Washington State University (WSU) took the time to recognize Rare Disease Day.  The McConnell family put together a video sharing some insight as to how a rare disease impacts a family. We are grateful to the team at WSU for their continued support of SSADH research and are…

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Proceedings Published from Virtual Conference

January 26, 2021

The manuscripts from the 2020 Virtual SSADH Conference are being published on-line through the Journal of Child Neurology.  We are expecting to publish up to nine papers.  The majority of the topics are from the presentations, however when we moved from an in-person to a virtual event we were forced to scale back and eliminate…

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Inducible SSADH Mouse Model

December 17, 2020

In early 2020, Drs. Rotenberg and Lee from Boston Children’s Hospital were given a one year $100,000 grant to create an additional SSADH Deficient mouse model.  The goal of this project was to allow researchers to turn on and off the gene mutation that causes SSADH at different stages of life.  The doctors are reporting…

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SSADH Consortium (SDIC)

October 20, 2020

The SSADH Virtual Conference was held on July 9 and 10, 2020. The top SSADH researchers and clinicians from around the world shared updates for medical professionals and patient families. Over 300 attendees registered, representing 25 countries and every continent. The proceedings from the event will be published as a supplement in the Journal of…

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Successful 22nd Annual Chip for Charity

September 17, 2020

The 22nd Annual Chip for Charity Golf Outing was help on September 10 in southern Wisconsin in honor of Sam Hoffman.  Unfortunately, in addition to managing the challenges that came with the COVID Pandemic we also had less than perfect weather.  However, regardless of the cold all day rain this didn’t dampen anyone’s commitment to…

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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, scented playdough and lots of themed items for hours of sensory fun!  The goal of each box is to help children develop and improve their motor skills, encourage language and promote cognitive development.  Not only…

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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, in Richfield, Wisconsin.  Last year’s event raised $123,000 pushing the cumulative total to 1.6 million dollars! Proceeds from the golf outing are used to help the SSADH Association in its commitment to the identification and…

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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 take place as two half day online presentations on July 9 and 10. Every effort was made to accommodate time zones and though we had to collapse the original agenda by ~50%, we kept the…

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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 to participate in the SSADH Natural History Study. Patients willing to participate in the SSADH Natural History Study from Spain should get in touch with Dr. Natalia Juliá (Neurologist) who will schedule your appointment.  This…

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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.

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