News

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…

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…

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…

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…

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…

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…