About Us

The Gold Coast Down Syndrome Organization is a family support and resource organization dedicated to serving families who have children with Down syndrome from birth through aging. Serving Palm Beach County families for 30 years, the organization has grown from once monthly meetings to months filled with activities that reach out to member families and the disability community. If you are having a baby or just recently had a baby with Down syndrome, we welcome you to our family of support.  If you have recently moved to the area, we're sure you will find our organization an active and energizing opportunity for your family. This website is filled with information about what we do and about what is going on in the community for individuals with Down syndrome and other disabilities. We hope you will take a few moments to visit.  We look forward to receiving your phone call or email and helping you find ways to get involved.  Welcome!

Gold Coast Down Syndrome Organization is affiliated with the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS).  We are also a member of the Southeast Regional Council (SERC). If you represent a parent support group in Florida, Georgia, North Carolina or South Carolina, please feel free to contact us for further information about how your organization can join SERC. 

Board of Directors
Sue Davis-Killian, President
Gail Marino, Vice President and Founder
Kathy Couglin, Secretary
David Faerman, Financial Officer
Tina Trujillo
Wayne Tonning
Zachary Gottsagen, Self-Advocate
Frank Harmon, Self-Advocate

Staff
Terri Harmon, Executive Director
Kathy Brown, Administrative Assistant
DeeAnne Feulner, The Learning Program Coordinator

Our History

The Gold Coast Down Syndrome Organization was started in 1980 by three mothers who had a common need to make a better life for their children with Down syndrome. The group first met in the home of one of the founders. No other group dedicated to advocating specifically for persons with Down syndrome existed in Palm Beach County at that time, nor does today.

The founders agreed that an organized group with members focused toward making positive changes would create a powerful and effective organization. In 1982, Gold Coast Down Syndrome Organization was incorporated, elected its first Board of Directors and began meeting regularly.  As the years progressed the organization continued to grow along with advocacy efforts across the country.  Below are some of the exciting activities we have in engaged in over the years!
 

• March, 1994 - An evening with self-advocates Jason Kingsley and Mitchell Levitz who came to Boca Raton to promote their book, Count Us In. Presenting along with Jason and Mitchell, were their moms, Emily Perl Kingsley (author of Welcome to Holland©) and Barbara Levitz who spoke to an intrigued audience. Afterward there was a book signing for Count Us In.
   
• August, 1994 - Chris Burke along with Joe and John DeMasi (Chris, Joe and John) performed their "A Special Kind of Hero, A Special Kind of Concert" for our organization and the community at Olympics Heights High School.  Afterward we had a reception where everyone met the newly famous television star, got autographs and took pictures!
   
• October 1995 - Gold Coast Down Syndrome Organization hosts its 1st Annual 5K Buddy Walk® in Haverhill Park.

• August, 1996 - After participating at the National Down Syndrome Congress Convention in Miami, Chris, Joe and John made a stop in Boca Raton to visit with our group.  Everyone gathered at a pizza restaurant for a mini concert.

• Summer, 1997 - We started our Teen Club with a handful of young people.  That group continues to grow today with teens and young adults who look forward to our monthly activities including quarterly dances.
   
• June, 2005 - Our first Statewide Healthcare Conference featuring such prominent national presenters as Brian Chicoine MD and Dennis McGuire PhD of the Adult Down Syndrome Center, Pediatrician George Capone MD from Kennedy Krieger who does work with dual diagnosis, Leslie Walker-Hirsch MEd who speaks on the topic of sexuality and individuals with developmental disabilities and self-advocate Mia Peterson.  Local speakers and friends of our organization included Pediatrician Leon Cohen MD, Nutritionist Lucille Beseler MS RS LD, Patricia Oliver MS BCBA from CARD and Andrea Lack from NDSS.
   
• June, 2006 - Second Statewide Healthcare Conference featuring prominent national presenters Brian Chicoine MD, Dennis McGuire PhD, Joan Guthrie Medlen RD LD, author of the Down Syndrome Nutrition Handbook and local presenters on behavior and sensory issues, Shawna Kingsley-Scott BAE and Jonathan Cohen MOT OTR/L SIPT.
   
• 2008 - Education Conference featuring Dana Halle from the Down Syndrome Foundation of Orange County and founder of The Learning Program.
   
• 2009 - Wellness Conference featuring prominent national presenters Brian Chicoine MD, Dennis McGuire PhD, Emily Perl Kingsley (author of Welcome to Holland©).