Down syndrome (DS) is a “common condition caused by having ‘extra’ copies of genes on the 21st chromosome,” according to the American Academy of Pediatrics (AAP). Although every person with DS is unique, these extra genes can affect development during pregnancy and childhood and health, learning and related differences throughout the person’s life.
Whether you are the parent of a child with DS or a special needs caregiver, early recognition and personal education is critical. Connecting with Down syndrome resources, organizations, support groups and other parents and families with first-hand experience caring for a child with DS is an important step in understanding the potential challenges and triumphs ahead.
Care.com spoke with Jess Quarello and Taryn Lagonigro, who are both moms to children with Down syndrome and who, together, founded Extra Lucky Moms, for their input on Down syndrome resources support groups, organizations and social media pages.
Down syndrome organizations
1. The Down Syndrome Diagnosis Network (DSDN)
The Down Syndrome Diagnosis Network is a favorite resource of Quarello and Lagonigro. “The goal of the DSDN is to connect, support and provide accurate, unbiased information to parents — and the medical professionals who serve them — from the time of diagnosis through age 3 while fostering the opportunity for meaningful connections,” Quarello says.
2. National Down Syndrome Congress (NDSC)
This is the oldest organization and support group in the United States for those affected by Down syndrome. NDSC focuses not only on those with the disorder and their relatives, but also the professionals who work with them. They advocate for those with Down syndrome through education, legislation, medical care and disability awareness. Expectant or new parents can access tons of useful information and advice to help them navigate their journey while also offering general education, health care, and speech-related resources for Down syndrome.
3. The Black Down Syndrome Association (BDSA)
The Black Down Syndrome Association is another organization Quarello and Lagonigro recommend. “The BDSA is a non-profit organization dedicated to providing Black families with the resources and support they need for their loved ones with Down Syndrome,” Quarello explains. Founded in 2022 by two Black mothers who have Black sons with Down Syndrome, the organization works to create a culturally competent, safe space for Black families and their loved ones with Down Syndrome, while ensuring they’re given the same opportunities and respect as everyone else.
4. GiGi’s Playhouse
From tutoring to fitness to cooking, Gigi’s Playhouse offers in-person classes, activities and support in 50 different locations across the country. “Gigi’s Playhouse is the only nationwide network of Down syndrome achievement centers,” Quarello says. “They change lives through free, results-driven programs for individuals of all ages, families and communities.”
5. National Down Syndrome Society (NDSS)
The National Down Syndrome Society is known as the “national advocate for the value, acceptance and inclusion” of those living with Down syndrome. In addition to the informative articles on the site, you can read personal stories, help raise funds for Down syndrome research and awareness, find support groups in your area and sign up to receive their e-newsletter and stay in the loop with all the latest Down syndrome news and information.
6. International Mosaic Down Syndrome Association (IMDSA)
For those with children who have been diagnosed with mosaic Down syndrome (mDs), the International Mosaic Down Syndrome Society is an organization completely dedicated to this rare form of the disorder. Parents can join the website and connect with others in their state with children or family members with mDs while medical professionals can connect with others who care for mDs patients and obtain information and the latest research on all things mDs.
7. National Association for Down Syndrome (NADS)
NADS offers specific support for new parents and grandparents, as well as parents of teenagers and adults with Down syndrome and health care professionals. NADS provides mentoring programs, parent support groups, parent workshops, family retreats and work experience programs for those living in the Chicago area, but their website contains educational information and helpful links to everything Down syndrome-related.
8. Down Syndrome Resource Foundation (DSRF)
The Down Syndrome Resource Foundation helps people with Down syndrome reach their full potential in life by empowering them through educational programs and services. The organization is focused on understanding the learning styles of those with Down syndrome and supporting parents of DS children. Children can enroll in a variety of classes specifically designed for them, including reading, music, communication and language programs.
9. The Arc
The Arc is an organization created to promote and protect the human rights of people with intellectual and developmental disabilities, including Down syndrome, and provide them and their families access to the information, advocacy and skills that support full inclusion and participation in the community throughout their lifetimes. With over 700 chapters nationwide, anyone touched by Down syndrome can search their online directory to find local support and guidance.
10. Association for Children with Down Syndrome (ACDS)
This organization provides lifelong resources for individuals with Down syndrome and their families. ACDS is an educational facility located in New York with three distinct programs: educational center and home-based (from birth to age 5), 5 Plus (for ages 5 and up) and Individualized Residential Alternatives (IRAs) for adults.
11. Global Down Syndrome Foundation
This is a nonprofit dedicated to improving the lives of people with Down syndrome through research, medical care, education and advocacy. Established in 2009, their primary focus of the Global Down Syndrome Foundation is to support the Linda Crnic Institute for Down Syndrome, which is solely committed to research and medical care for people with Down syndrome. Learn about the latest research and medical care, get involved, learn about programs, events and conferences and sign up for their mailing list to stay up to date.
12. Extra Lucky Moms (ELM)
Extra Lucky Moms offers support in a number of ways, including their ELM Down Syndrome Guide for Children. “This is a downloadable guide that breaks down some of the common questions about Down syndrome and shares some facts in a child and classroom friendly format,” notes Quarello.
Down’s syndrome support groups
13. Uno Mas! Forum
Uno Mas! is strictly an online forum dedicated to supporting the caregivers of children with Down syndrome. The message board is broken down into health and medical issues, general DS information and education-related topics, as well as a book club and get-together sections.
14. Local parent support groups
The AAP recommends local parent support groups as a beneficial resource for learning about doctors, therapists, day cares, schools and local developmental programs in your community, as well as problems with behavior, help with child care and more. Check with your doctor’s office for names and contact information for groups in your area.
Down syndrome social media community
Looking to connect more? Here are a few Down syndrome Instagram resources and families to follow, along with the coolest TikTokers with Down syndrome.
Instagram:
TikTok:
The bottom line
Researching Down syndrome is an essential first step towards educating yourself about the disorder and its potential challenges. Find support from others in your situation by contacting any reputable Down syndrome organization to gain insight and knowledge, as well as share personal experiences.
With adequate love, care and support, every child with DS can live a happy and fulfilling life.
