News

$100,000 Awarded to WSU

May 26, 2021

The amount of $100,000 was awarded to Drs. Gibson and Roullet at Washington State University to extend the initial funding of the SSADH Biorepository for the period of 10/01/21 to…

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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…

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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…

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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.…

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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…

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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…

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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…

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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…

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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…

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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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