Down Syndrome
Down syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21. It affects a person’s physical features, learning abilities, and development, though the severity can vary widely. Common traits include mild to moderate intellectual disability, distinct facial features, and potential health concerns such as heart or hearing issues. With early intervention, education, and supportive care, many people with Down syndrome lead healthy, fulfilling lives. It is the most common chromosomal condition diagnosed in the United States.
Maine Resources
Down Syndrome Advocacy Project of Maine (DSAP) - A nonprofit organization committed to enhancing the lives of individuals with Down syndrome through education, advocacy, and community engagement. Serving families and self-advocates across Maine, DSAP offers resources on education, employment, healthcare, housing, and financial planning. Notable initiatives include the Blue Envelope Program, which facilitates safer interactions between law enforcement and individuals with cognitive disabilities, and a scholarship program supporting postsecondary education and vocational training. DSAP also provides outreach for new and expectant parents, hosts community events, and maintains an online resource hub to promote inclusion and independence.
Eastern Maine Down Syndrome Support (EMDSS) - A nonprofit founded in 2021 by six mothers aiming to build a supportive community for individuals with Down syndrome and their families across the region. EMDSS offers resources spanning from diagnosis through adulthood, including curated information on healthcare, therapy, financial assistance, and national and state-level support services. The organization hosts inclusive events such as holiday parties and the annual “A Little EXTRAvaganza” to foster connection and celebration within the community. EMDSS is volunteer-led and actively engages families through its website and Facebook page.
Maine Down Syndrome Network (MDSN) - Dedicated to promoting awareness and acceptance of individuals with Down syndrome across Maine. Founded in 2001 by two mothers seeking support, MDSN has grown into a statewide network offering programs like the First Call outreach for new and expectant parents, an annual conference, Buddy Walks in Portland and Augusta, and specialized resources for educators and healthcare providers. The organization serves individuals with Down syndrome, their families, and professionals, providing support, education, and advocacy to foster inclusion and empowerment. Key features include a lending library, D.A.D.S. (Dads Appreciating Down Syndrome) group, and various community events.
Regional Resources
Boston Children's Hospital - Down Syndrome Program - Offers comprehensive, multidisciplinary care for individuals with Down syndrome from birth through age 22. The program provides specialized medical services, developmental assessments, and individualized care plans, addressing complex medical and neurodevelopmental needs. Families have access to a variety of resources, including the Allen C. Crocker Speaker Series, virtual inclusive yoga classes, the DS-Fit fitness program, and Mae’s Market, which supplies developmental tools at no cost. Additional support includes transition planning, employment readiness programs, and a two-year internship for young adults with Down syndrome. The program also offers financial assistance to families facing economic hardship, ensuring equitable access to services.
Down Syndrome Resource Group of Western Massachusetts (DSRGWM) - A nonprofit organization dedicated to uplifting individuals with Down syndrome and their families through outreach, education, and community involvement. Serving families across Western Massachusetts, DSRGWM offers programs such as monthly playgroups for all ages, teen and adult events, and resources for new and expectant parents. The organization provides scholarships to support participation in enrichment activities like dance and sports, fostering inclusion and personal growth. DSRGWM also hosts community events, including the annual Buddy Walk and fundraisers like "Groovin' with Garrett," to promote awareness and support.
Massachusetts Down Syndrome Congress (MDSC) - Offers a broad range of programs and services, including the National Parents First Call Center for new and expectant parents, the Advocates in Motion (AIM) program for teens and young adults, and the Your Next Star Employment Center promoting inclusive hiring. Serving individuals with Down syndrome and their families across Massachusetts and beyond, MDSC provides resources, advocacy, and community connections throughout the lifespan. Key features include annual conferences, legislative advocacy initiatives, and a comprehensive resource library.
Massachusetts General Hospital - Down Syndrome Resources - Offers an extensive collection of multilingual patient handouts designed to support individuals with Down syndrome and their families across all life stages. These resources cover topics such as prenatal guidance, breastfeeding, early developmental milestones, feeding strategies, sleep, and managing co-occurring conditions like celiac disease. Materials are available in multiple languages, including English, Spanish, and Chinese, ensuring accessibility for diverse families.
New Hampshire Down Syndrome Association (NHDSA) - Dedicated to supporting individuals with Down syndrome and their families across the state. NHDSA offers a range of programs, including new parent outreach, educational resources, and community events like the annual Buddy Walk, which raises awareness and funds for their initiatives. The organization provides individual and organizational grants to assist with expenses related to therapies, educational programs, and other needs, ensuring equitable access to support services. Through these efforts, NHDSA fosters inclusion, empowerment, and a connected community for people with Down syndrome throughout New Hampshire.
National Resources
Centers for Disease Control (CDC) - Down Syndrome - Provides comprehensive, evidence-based information on Down syndrome, covering its causes, types, common health concerns, and developmental impacts. It educates families, healthcare providers, and the public about the three types of Down syndrome—Trisomy 21, Translocation, and Mosaic—and associated conditions like congenital heart defects, hearing loss, and sleep apnea. The CDC also offers guidance on early intervention, growth monitoring, and long-term care strategies to support individuals with Down syndrome throughout their lives. This resource is designed to assist families, caregivers, and professionals in understanding and managing Down syndrome effectively.
Dads Appreciating Down Syndrome (D.A.D.S.) - Dedicated to supporting fathers of children with Down syndrome through fellowship and action. Operating through local chapters across the U.S. and internationally, D.A.D.S. offers monthly meetings, expert-led discussions, and community events to foster connection and shared learning among dads. The organization emphasizes its three foundational pillars: Support, Action, and Fellowship, encouraging active participation in children's lives and community advocacy. D.A.D.S. also provides mentorship for new chapters, an "Ask a D.A.D." resource for peer advice, and a national email loop to keep members informed and connected.
Down Syndrome Education International - Dedicated to improving education for children with Down syndrome through research-based resources and programs. It offers evidence-based tools like the “See and Learn” program for early speech, language, and numeracy development, and the Reading and Language Intervention (RLI) for children aged 5–11. DSE also provides online training courses for parents, educators, and therapists, all grounded in over 40 years of research led by Professor Sue Buckley OBE. Serving families and professionals worldwide, DSE’s offerings include downloadable materials, online learning platforms, and a global community forum.
National Association for Down Syndrome (NADS) - Offers programs including parent support, self-advocate development, and public education initiatives. The organization provides resources for all life stages, from prenatal support to adult services, and conducts hospital in-service training to educate medical professionals. NADS also hosts community events such as webinars, meetups, and an annual fashion show to foster connection and awareness. Through these efforts, NADS aims to empower individuals with Down syndrome to achieve their full potential.
National Down Syndrome Congress - Dedicated to promoting the interests of people with Down syndrome and their families through advocacy, public awareness, and information. NDSC offers a range of programs and resources for individuals with Down syndrome, their families, and professionals, including educational materials, policy advocacy, and community support initiatives. Serving individuals across the United States, NDSC is committed to fostering a culture of diversity, equity, and inclusion, ensuring that everyone is respected and valued. Key features include the annual NDSC Convention, which brings together experts, families, and self-advocates, as well as various outreach and education programs designed to support individuals with Down syndrome throughout their lives.
National Down Syndrome Society (NDSS) - Provides resources, drives policy change, and engages communities through programs like the Buddy Walk® (advocacy event) and a network of over 250 local affiliates. NDSS supports individuals with Down syndrome and their families across the U.S., offering tools for education, employment, health, and independent living. Notably, the Bright Future Fund offers financial assistance to young adults with Down syndrome pursuing postsecondary education and enrichment programs.