History

The Down Syndrome Community began almost thirty years ago, in 1988, when a small group of parents began meeting on a regular basis to support each other in raising a child with Down syndrome. The first meeting, organized by Amy Jahn and Vicki Louden, drew parents from Federal Way to Woodinville. The group continued to meet in various homes to share advice and stories and to provide a network of support. Soon they outgrew homes and began meeting at the Renton Good Neighbor Center, which the organization offered for free.

 

As the group gained momentum, the parents decided conferences focused on developmental disabilities would benefit many families. From 1990-1996, with the help of Pat Oelwein, a series of four conferences were held at the University of Washington Experimental Education Unit, part of the Center on Human Development and Disability (CHDD), now the Haring Center. After the first conference, the DSC started a newsletter called the Powerline with help from the Arc of King County. The DSC and the Arc remain allies to this day.

 

From 1991-1994, the DSC invited professional speakers to come speak about various topics important to everyone, from inclusive education programs to independent living after school. They also prepared new parent packets for area hospitals, funded in part by a $500 grant from March of Dimes. In addition to the packets, a small group of moms visited area hospitals and provided training to nurses on how to respond to parents who had just given birth to a child with Down syndrome. The major social event of the year was the annual Holiday Party with a visit from Santa and Mrs. Claus, a tradition that continues to this day.

 

Around 1995 a collective of new parents had formed a small group within the DSC to discuss their unique needs for support, and LAUNCH (Leadership, Advocacy, Understanding and Networking for a Community of Hope) was born. LAUNCH became an affiliate group within the DSC, holding a monthly guest speaker series at the Highland Community Center in Bellevue.

 

Thanks to the efforts of Nick Kappes, the DSC issued Articles of Incorporation and became a Washington Nonprofit Corporation, complete with bylaws on March 23, 1998. Five years later, on September 19, 2003, the DSC became recognized by the IRS as a 501(c)(3) public charity.

 

In 1996, Ramona Gillett read an article in the NDSS newsletter about the Buddy Walk that was held in New York City. Sparked by Ramona’s desire to help the NDSS establish a Buddy Walk in every major city across the United States, the DSC sponsored the first Puget Sound area Buddy Walk in October of 1997. We have watched it grow every year since, and it is now the premier celebration of Trisomy 21 in the state.

 

Over the most recent 15 years, the DSC continued to honor its humble beginnings by holding the Sweetheart Dance, Megarama Day and Holiday Party social events every year. In the meantime, we have offered numerous conferences, continued to work closely with local and national organizations on education and advocacy, welcomed new affiliates, refreshed our new parent initiatives, and co-sponsored many great events. Having reached a critical mass financially, the DSC began a significant restructuring in 2015 in order to more equitably and effectively offer a comprehensive vision that includes public outreach, self-advocacy, and community groups in addition to our traditional strengths of education and community events.