Down Syndrome Community History

The Down Syndrome Community began in 1988-89 when a small group of parents began meeting on a regular basis to support each other in raising their child with Down syndrome.  The first meeting, organized by Amy Jahn and Vicki Louden, drew parents from all around the region from Federal Way to Woodinville.  The group met in various homes around the Puget Sound area and shared stories of success and of heartache, just like we do today.  The group quickly out grew the homes so the Renton Good Neighbor Center offered their facility, free of charge, so the parents could meet.  These are the parents that have paved the way for many of us that are raising young kids today. 

During the early years the parents discussed what the goals and objectives of the group should be.  Many parents felt that conferences would benefit many families by bringing together professionals from various disciplines to discuss their work in the area of developmental disabilities.  From 1990 to 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), formally known as the CDMRC.  After the first conference the group realized there was a strong need for communication, so in an effort to communicate with everyone a small newsletter was started that eventually was called “The Powerline”.  The DSC received help from the ARC of King County for reproduction and mailing of the newsletter.  By the second conference the mailing list had grown to more than 300 families all across the northwest region including: California, Oregon, Idaho, Montana, Washington and Canada. 

From 1991 to 1994 the group went through a lot of ups and downs.  The core group of parents worked to keep the group together.  The leadership 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 for distribution to new parents of a child with Down syndrome.  This program took on new vigor in 1994 after we received a $500 grant from March of Dimes to fund the packets and to develop a DSC brochure for distribution with the hospital packets.   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 today.

Between 1994 & 1996 a group of new parents formed a small group within the greater DSC to discuss their unique needs for support.  This group quickly began to take on a life of its own and a core group, headed by Lynn Chittenden, took the lead and decided they need to be more formalized with goals and objectives for meeting the needs of the group.  Thus, L.A.U.N.C.H. (Leadership, Advocacy, Understanding, and Networking for a Community of Hope) was born.  LAUNCH is an affiliate group within the DSC and they hold a monthly guest speaker series (open to everyone) on the third Thursday of each month at the Highland Community Center in Bellevue. 

In 1996, Ramona Gillett read an article in the National Down Syndrome Society newsletter about the Buddy Walk that was held in New York City.  This instilled a dream in Ramona sparked by the desire of the NDSS to establish a Buddy Walk in every major city across America.  Ramona said, “We have to have a Buddy Walk in Seattle”.  Our first Buddy Walk was held in October 1997, and has grown to be our largest and only fundraising event with over 600 people participating in this our 6^th Annual Buddy Walk. 

In 1998, the Board of Directors decided it was time for the DSC to obtain its non-profit status with the Internal Revenue Service.  The process required that we become a corporation recognized by the State of Washington.  We sought the advice of legal counsel who helped us write our Articles of Incorporation and By-Laws.  We then made application with the IRS to obtain our 501(c)(3) Non-Profit status, which we obtained in January 1999. 

In 2001, the DSC received money in memory of Heidi Heier and the Board decided to establish a Memorial Lending Library in her honor.  The money collected was used to purchase books, videos, tapes and other resource materials that our members can check-out and use at no cost.   

The Board also began holding annual planning meetings to discuss and schedule our activities/events for the upcoming year.  With one event scheduled each month throughout the year, this planning session has helped us have a very smooth year for the past two years.  The Board is in the process of developing a 10 year Strategic Plan that will help us record and document the policies and procedures for the DSC. 

During 2001 the Board talked about developing a web page to help the DSC get the word out about our programs and activities and our web site was up and running in early 2002.  Please visit our web site at www.downsyndromecommunity.org. 

During 2002 the Board of Directors voted to include “The Upside” a Kitsap County Down syndrome support group as an affiliate of the DSC.  The Upside has existed over in Kitsap County for years and consist of approximately 25 – 30 families and we are happy to have them a part of the DSC. 

Board meetings are held every other month from September through May and are open to any member of the Down Syndrome Community.  Please see our event calendar, or contact Linda Michael, 206-241-0353  or by e-mail  to confirm time and location of Board meetings.  

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