Down Syndrome Hub
More than 400,000 individuals in the United States have Down syndrome, or trisomy 21–a chromosomal condition caused by an extra 21st chromosome. Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 733 babies is born with Down syndrome each year.
Waisman Down Syndrome Activities
Down Syndrome Clinic
The Waisman Center provides comprehensive clinical care and support for children with disabilities and their families.
Day with the Experts: Down Syndrome
Since 2010, Day with the Experts: Down Syndrome has focused on sharing knowledge about Down syndrome across the life course, from research using stem cells to the latest standards of care.
BioLibrary
The Waisman BioLibrary is a new Waisman Center initiative. The first study from this project is related to Down syndrome. Visit to learn more.
UCEDD
The mission of the Waisman Center, University Center for Excellence in Developmental Disabilities (UCEDD) is to support the full inclusion and self determination of people with developmental disabilities and their families. Autism is a major area of focus.
Children’s Resource Center-South
Guiding Wisconsin families of children and youth with special health care needs. We are parents and professionals who can help get answers, find services, connect you to community resources, provide trainings, and support you on your journey.
Studies Recruiting
Down Syndrome Studies Recruiting
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METabolic Health, Lifestyle, and Risk of Co-Occurring Health Conditions in Down Syndrome (MET-DS) – (Hartley)
The METabolic Health, Lifestyle, and Risk of Co-Occurring Health Conditions in Down Syndrome (MET-DS) study is part of the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down…
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Exploring Menopause and Caregiving Experiences of Mothers of Children with and Without developmental disabilities (Columna)
Are you a mother between 35 and 65 years old who is the primary caregiver of a child (with or without a developmental disability such as autism, Down syndrome, or other conditions)?
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BuILD Study (Brain Imaging and Language Development in Infants with Down Syndrome) (Dean)
Recruiting parents of children with Down Syndrome who are between 1 and 24 months old.
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Are you a young adult with Down syndrome looking to make brain waves for science? (Litovsky)
Our Goals: We hope you will be a part of the first study for young adults with Down syndrome to combine: Who can help? Young adults with Down syndrome who are: How…
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Leveraging Technology to Identify Outcome Measures for Young Children with Down Syndrome (Sterling)
Our study aims to learn more about how language samples collected in the home can be used to measure the language development of children with Down syndrome.
Events
Down Syndrome Events
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Maravillas del WaismanFecha: 27 de agosto de 2026 Tema: ¿Qué ofrece el Waisman Center a la comunidad? Invitadas: Charlene Rivera-Bonet y Aracely Portillo Resumen: Las Maravillas del Waisman está en su quinto año como programa radial, trayendo información acerca de desarrollo humano, discapacidades intelectuales y del desarrollo, y enfermedades neurodegenerativas, con investigaciones y servicios en el Waisman Center …
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Seminar – Ari Ne’eman, PhD – “The Role of Public Policy in Facilitating the Inclusion of People with Disabilities in Society” **Special Thursday seminar**Ari Ne’eman, PhDHarvard UniversityProfile About the Speaker: Ari Ne’eman is an Assistant Professor of Health Policy and Management at the Harvard T.H. Chan School of Public Health. His research focuses on the role that public policy can play in facilitating the inclusion of people with disabilities throughout society. His primary research interests are in long-term services …
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Seminar – Brian Lee, PhD – “Integrated Multimodal Profiling of Human Cortical Neurons”Brian Lee, PhDAllen InstituteProfile About the Speaker: Brian Lee joined the Allen Institute in 2014 as a scientist in the Mouse Cell Types research program. Before joining the Allen Institute he was a postdoctoral research associate in the lab of Paul Kenny at the Scripps Research Institute in Jupiter, FL. In Dr. Kenny’s lab he …
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Seminar – Jonathan Kipnis, PhD – “Anatomy of ‘Brainwashing’ and How It is Related to Brain Health”Jonathan Kipnis, PhD Washington University in St. Louis Lab Website About the Speaker: Dr. Jonathan (Jony) Kipnis is BJC Investigator, Alan A. and Edith L. Wolff Distinguished Professor of Pathology and Immunology and Professor of Neurology, Neuroscience, and Neurosurgery at Washington University in St. Louis, School of Medicine. He is also the inaugural Director of Brain immunology and Glia (BIG) …
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Seminar – Tracy Young-Pearse, PhD – “Development of Human Microphysiological Systems for Modeling Disease Complexity and Testing Interventional Strategies for Alzheimer’s Disease”Tracy Young Pearse, PhDHarvard UniversityProfile About the Speaker: Tracy Young-Pearse is a Professor of Neurology at Harvard Medical School, the Dennis J. Selkoe Distinguished Chair in Neurology, and the co-director of the Harvard Stem Cell Institute’s Nervous System Diseases program. She received her undergraduate degree in her hometown of Saratoga Springs, NY from Skidmore College and …
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Waisman Whirl Run, Walk & Roll for All Abilities 2026
Registration is now open! Get your shoes and wheels ready for the 2025 Waisman Whirl Run, Walk & Roll. Join us for the 12th annual Waisman Whirl Run, Walk, & Roll for All Abilities Saturday, September 26, 2026 at 9 am. 5k run, walk or roll, and 1 mile walk or roll courses Proceeds benefit …
Down Syndrome Researchers
News
Waisman Down Syndrome News
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Changes in walking patterns could be an important new screening tool for Alzheimer’s in individuals with Down syndrome
Individuals with Down syndrome have a 90% lifetime risk of developing Alzheimer’s disease.
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Earliest signs of neurodegeneration in Down syndrome detected shortly after birth, new Waisman study shows
Signs of neurodegeneration in individuals with Down syndrome may start as early as birth, a critical stage of brain development, a new study shows. The research, from investigators at the Waisman Center,…
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Developmental markers have the potential to make diagnosing autism in individuals with Down syndrome easier
Down syndrome, a neurodevelopmental condition caused by a triplicated 21st chromosome, often presents with co-occurring developmental conditions such as autism. But diagnosing autism in someone with Down syndrome can be difficult as…
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Early adversity strongly predicts adult mental health challenges in people with Down syndrome, new study finds
A new Waisman study found that adverse childhood experiences (ACEs)—such as abuse, neglect, or exposure to household challenges—can have lasting effects on adults with Down syndrome, including their mental health and ability…
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Wisconsin LEND trainees visit state legislators to share their personal stories and educate about the impact of Medicaid on Wisconsinites with disabilities
The Wisconsin LEND Program prepares individuals with disabilities to engage in policy discussions, giving them the tools and confidence to make their voices heard.
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Health trajectory of mothers of children with developmental disabilities shows a ‘wear-and-tear’ effect starting around age 65
Mothers of children with developmental disabilities experience long-term stress, adapting for many years but showing signs of ‘wear-and-tear’ starting around age 65, affecting their physical and mental health.
Partners
Our Partners
The Waisman Center works in collaboration with community partners to serve the Down Syndrome community through outreach and training.
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Additional Resources
Resources & Services
Research Participation | 800.965.9205; 608.263.5192; registry@waisman.wisc.edu; Participate in Research
The Waisman Center’s Research Registry links individuals and families to research projects at the Waisman Center. The Waisman Center maintains a confidential registry of families and individuals who would like to be contacted about upcoming research projects. Enrollment in the Research Registry does not obligate an individual or family to participate in any study.
Community Outreach for Children with Challenging Behaviors | 608-265-9438; cow.waisman.wisc.edu/ties
Community Training, Intervention and Evaluations Services (TIES) is an outreach program for children and adults with developmental disabilities who present various challenging behaviors, including withdrawal, aggression and self-injury. The mission of Community TIES is to address behavioral, psychological, and emotional needs using therapeutic approaches that insure continued participation in the community. TIES provides counseling, crisis response, psychiatric consultation, parent education and support, and training for personnel and program consultation in local human service agencies. Directed by Josh Lapin, MSW, and funded by Dane County, this program maintains an active caseload of approximately 250 children and adults in Dane County.
Finding Your Way: Videos for Families | wicii.waisman.wisc.edu/training/fyw-videos/
Finding Your Way is a video series for families and caregivers of children with intellectual and developmental disabilities. The videos provide information on services and resources for children with disabilities in Wisconsin. Topics include the Birth to Three Program, Children’s Long-Term Supports Program (CLTS)/Children’s Community Options Program (CCOP), Early Childhood Special Education, Head Start/Early Head Start, Home Visiting Programs, Katie Beckett Medicaid, Outpatient Therapy, and Supplemental Security Income (SSI).
Moving to Adult Health Care: A 6-Part Toolkit Series for Health Care Transition | https://movingtoadulthealthcare.org/toolkits/
These toolkits aim to help you learn and get ready for moving to adult health care and living a healthy adult life. They will give you lots of information and resources to help you during this time of transition. Each toolkit will focus on a different topic about health care transition.
Wisconsin Wayfinder: Essential Children’s Resources | 877-947-2929; dhs.wisconsin.gov/wiscway/Wisconsin Wayfinder supports families of children with delays, disabilities, special health care needs, and mental health conditions. Children’s resource guides are helpers who assist families, caregivers, professionals, and organizations in finding a wide array of supports and services available through the Children’s Resource Network. Their services are free and confidential. Connect with a children’s resource guide. Call (877) WiscWay or use our contact form.
Well Badger Resource Center | 800-642-7837; text: 608-360-9328; help@wellbadger.org; https://www.wellbadger.org/
When you have questions about health and social services, figuring out where to go when you need help can be overwhelming. We’re here to make it easier. Well Badger Resource Center is your one-stop connection to community, social, health, and government programs — a place to find what you need, when you need it.