Access to quality resources is essential for individuals with Down syndrome and their families. From educational support and therapy services to community programs and advocacy, resources provide the tools needed to help individuals with Down syndrome grow, build independence, and achieve their goals.
For families, resources offer guidance, connection, and reassurance, helping them navigate challenges and celebrate milestones with confidence. Strong support systems also foster inclusion, ensuring that individuals with Down syndrome are seen, valued, and given equal opportunities in all areas of life.
Gigi’s Playhouse Everett – COMING SOON to Everett, WA, Gigi’s Playhouse offers FREE educational, therapeutic, and career development programs for individuals with Down syndrome, their families, and the community, using a replicable playhouse model
ARC OF SNOHOMISH COUNTY– Part of the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We encompass all ages and all spectrums from autism, Down syndrome, Fragile X and various other developmental disabilities.
DOWN SYNDROME COMMUNITY OF PUGET SOUND–Their mission is to provide impactful programs and resources for individuals with Down syndrome and their families while evolving perceptions in the broader community.
ARC OF WASHINGTON STATE-The Arc of Washington State is a leader in developing services and programs for people with intellectual and developmental disabilities.
WASHINGTON STATE FATHER’S NETWORK-Their mission is to promote fathers as crucially important people in their children’s and families’ lives.
DEVELOPMENTAL DISABILITIES ADMINISTRATION (DDA)-The DDA Mission: Transforming lives by providing support and fostering partnerships that empower people to live the lives they want.
WASHINGTON STATE DEVELOPMENTAL DISABILITIES COUNCIL-The DDC works to assure that individuals with developmental disabilities and their families have access to supports that promote independence, productivity, integration and inclusion into the community of their choice.
INFORMING FAMILIES-Find opportunities for your child to grow and develop. Learn about early intervention services and connect with other families.
SHERWOOD COMMUNITY SERVICES-They believe people with disabilities and their families should have the opportunities and support to reach their full potential.
CHILDSTRIVE-ChildStrive’s success stems from a foundational belief in family empowerment and a strength-based model that maximizes each child’s abilities so that they can get the very best start in life.
PROVIDENCE CHILDREN’S CENTER-The Providence Children’s Center was established in the early 1980’s as a Neurodevelopmental Center, initially to compensate for children with special health needs that did not have primary health providers. We see children from birth through two years of age in the natural environment. For children three and older, services are provided in the clinic. In addition to the outpatient setting, we also provide therapy services to children in the Neonatal Intensive Care Unit (NICU).
National Down Syndrome Society (NDSS) – The mission of the NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
National Down Syndrome Congress (NDSC) – The NDSC works to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.
Global Down Syndrome Foundation (GDSF) – GDSF is dedicated to significantly improving the lives for people with Down syndrome through research, medical care, education and advocacy
Down Syndrome Diagnosis Network (DSDN) – The mission of the Down Syndrome Diagnosis Network is to connect, support, and provide accurate information for families with a Down syndrome diagnosis. Our vision is to ensure families have unbiased and factually accurate diagnosis experiences, every time, through which families quickly know they’re not alone.
International Mosaic Down Syndrome Association – MDSA is designed to provide support, information and research to anyone whose life has been affected by mosaic Down syndrome.
Down Syndrome International (DSI)- Global network of people with Down syndrome and their families. DSI speak up for the human rights of all people with Down syndrome around the world.
Spread the Word to End the Word – Campaign to raise awareness about the hurtfulness of the r-word.
DS-Connect: Down Syndrome Registry – The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.
World Down Syndrome Day– A global awareness day on March 21 to honor and celebrate those with Down syndrome
Social Security Disability Insurance (SSDI) –) – SSDRC informs how the Social Security Disability and SSI Disability process works from start to finish.
Wrightslaw – Wrightslaw provides accurate and reliable information about special education law, education law, and advocacy for children with disabilities.
Riverbend Down Syndrome Association– Our aim is to support each other and enrich the lives of our children so they may reach their fullest potential to lead an independent life within the community.
Special Olympics – Special Olympics is a global sports movement that unleashes the human spirit every day around the world through the transformative power and joy of sport
TOPSoccer (The Outreach Program for Soccer)- is a community-based recreational program for athletes ages 4 through adult, focused on creating a supportive, inclusive, and structured environment where everyone can play, grow, and thrive.
ALL ABOARD-Our mission is to provide recreational, social, and educational activities for adults with special needs and help them develop an active, positive, and inclusive lifestyle.
ALYSSA BURNETT CENTER-Seattle Children’s Alyssa Burnett Adult Life Center (ABC) offers year-round classes and activities for adults, age 18 or older, with autism spectrum disorder (ASD) and other developmental disabilities.
CENTER FOR INDEPENDENCE-The Center for Independence is a 501 (C) (3) organization serving as a resource for individuals with disabilities to fully access and participate in the community through outreach, advocacy, and independent living skills development.
NORTHSHORE WRANGLERS-Promoting “Fun For All”, the Northshore Wranglers Inclusion Program provides inclusion, fun and friendships for individuals of all ages and abilities through year-round inclusion, recreation, skills and socialization opportunities, as well as advocacy and family support.
QUILCEDA COMMUNITY SERVICES-WILLOW PLACE-The mission of Quilceda Community Services is to provide individualized, quality residential care and recreation to special needs adults in a safe, respectful, positive environment that is meaningful to the individual being served.
YMCA OF SNOHOMISH COUNTY-Their mission is to inspire, nurture, and strengthen culturally vibrant communities through youth development, healthy living, and social responsibility.
WRIGHTSLAW-Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
IEP Toolkit – IEP Toolkit was created by the Educational Coordinator at Cincinnati Children’s Hospital Medical Center to help families of children with Down syndrome become knowledgeable, prepared and empowered partners in the IEP process.
NATIONAL ASSOCIATION FOR CHILD DEVELOPMENT-NACD’s toolbox contains over 3,000 different methods and techniques; we investigate, integrate, and develop new tools daily.
PLEASE DO YOUR RESEARCH IN REGARD TO ALL MEDICAL AND NUTRITIONAL INFORMATION.
DOWN SYNDROME PROGRAM-VIRGINIA MASON-The Down Syndrome Program at Virginia Mason Franciscan Health is the first and only one of its kind in the Pacific Northwest. This unique program offers a wide range of services, including primary care for children and adults, health care maintenance, coordination of subspecialty needs, prenatal consultations, and support through the entire life span.
University of Washington Institute of Human Development and Disability DOWN SYNDROME SPECIALTY CLINIC– The Down Syndrome Specialty Clinic was founded in 2016 with the goal to provide long-term developmental and behavioral consults and care for individuals with Down syndrome and their families.
DOWN SYNDROME AUTISM CONNECTION– Our mission is to provide specialized outreach through support, education, and resources to increase awareness of the unique challenges caused by co-occurring Down syndrome and autism.
NDSS-HEALTHCARE AND RESEARCH-The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.
Information provided by National Down Syndrome Society
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.
There are three types of Down syndrome. Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra critical portion of chromosome 21 present in all or some of their cells.
Trisomy 21 (Nondisjunction)
Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21.
Mosaicism
Mosaicism (or mosaic Down syndrome) is diagnosed when there is a mixture of two types of cells, some containing the usual 46 chromosomes and some containing 47. Those cells with 47 chromosomes contain an extra chromosome 21.
Mosaicism is the least common form of Down syndrome and accounts for only about 2% of all cases of Down syndrome (Facts about Down syndrome, 2021). Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.
Translocation
In translocation, which accounts for about 3% of cases of Down syndrome, the total number of chromosomes in the cells remains 46; however, an additional full or partial copy of chromosome 21 attaches to another chromosome, usually chromosome 14 (Facts and Down syndrome, 2021). The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.