Down syndrome advocates and caregivers, myDSC provides "onestop shopping" for families, educators, caregivers, and others seeking evidence-based information on a wide variety of Down syndrome-related topics.
Because of LuMind IDSC's deep expertise in research and our network of clinicians and researchers, we are able to vet the quality of research and medical resources we provide in myDSC. Through the Down syndrome Clinical Trials Network and the LuMind IDSC Down syndrome Research Consortium, we accelerate translational research into the unmet medical needs of people with Down syndrome and welcome families to learn more about Down syndrome research.
Down syndrome research is of huge importance to our community. As people with Down syndrome live longer and more independently than any generation before, we aim to support their health and wellbeing at every stage of life. Our organization does that through a variety of research initiatives, and by providing family-friendly information and ways to connect.
For families interested in Down syndrome research:
- What is Down syndrome research?: lumindidsc.org/myDSmoment
- Down Syndrome Clinical Trials Network (DS-CTN): ds-ctn.org
- Introduction to Down syndrome-related Alzheimer's disease: luminididsc.org/research
- Clinical Trial Finder (linked to U.S. government directory): lumindidsc.org/ClinicalTrialFinder
For caregivers looking for medical and health resources:
- Comprehensive information regarding COVID-19 and Down syndrome: LuMindIDSC.org/COVID19
- Specialized questions and practical answers for adolescent and adult Down syndrome-related health issues: Ask Dr. Chicoine (via free myDSC subscription): myDSC.org
- Down Syndrome Clinic to You (DSC2U) – An online toolkit
ANOTHER LOOK : MORE DOWN SYNDROME RESOURCES
ANOTHER LOOK : MORE DOWN SYNDROME RESOURCES
In addition to our own curated resources, LuMind IDSC works closely with and highly recommends other Down syndrome organizations with expertise in the following areas.
NATIONAL DOWN SYNDROME SOCIETY Advocacy and employment www2.www.ndss.org
Virtual programs and services gigisplayhouse.org/gigisathome
MASSACHUSETTS DOWN SYNDROME CONGRESS Pre-natal/newborn resources www.MDSC.org
YOUR NEXT STAR Education and employment initiatives https://yournextstar.com
T21RS COVID-19 research and resources www.t21rs.org/covid-19
SOCIAL STUDIES : PEER-TO-PEER SUPPORT FOR A WIDE VARIETY OF PEOPLE WITH TIES TO DOWN SYNDROME
Facebook Group | Audience/Users |
---|---|
Adoptive Family Support | Support group for parents who have adopted, or are in the process of adopting a child with Down syndrome |
Babies and Toddlers | Support group to connect parents who are new to the Down syndrome journey |
Connections | Support group for parents and caregivers of loved ones of all ages with Down syndrome |
Conexion en Espanol | Conectar a la gente de habla hispana que tienen hijos con Sindrome Down |
Dads | Support group for fathers of children with Down syndrome or those expecting a child with Down syndrome |
Dual Diagnosis | Support group for parents who have a loved one with a dual diagnosis of Down syndrome and autism |
Educators | Support group for certified teachers and teacher assistants educating students who have Down syndrome |
Friends and Family | Support group for anyone who has friends with Down syndrome or a loved one with Down syndrome |
Grandparents | Support group for grandparents that have a grandchild with Down syndrome |
Love and Loss | Support group for people who have lost a loved one with Down syndrome |
Parents/Caregivers of Preteens/Teens/Adults: | Support group for parents and caregivers of loved ones with Down syndrome that are preteen age through adulthood |
Pre-K/Elementary | Support group for parents who have a child with Down syndrome attending pre-K through elementary school |
Prenatal Diagnosis | Support group to connect parents who are new to the Down syndrome journey |
Research & Medical Care Group | Support group for parents, families, and caregivers |
Self-Advocates | Support group to connect people with Down syndrome |
Siblings | Support group for siblings of people with Down syndrome |