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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Terry Dolan Memorial Lecture – Judith Steen, PhD – Topic: Cell Types Within the Visual Cortex and the Encoding of Visual Information Within the BrainJudith Steen, PhD Boston Children’s Hospital Profile About the Speaker: Dr. Steen is a Professor of Neurobiology at Harvard Medical School, a member of the Harvard Stem Cell Institute and the Director of the Neuroproteomics Laboratory in the F. M. Kirby Neuroscience Center at Boston Children’s Hospital. Her laboratory works to understand neuro-regeneration and neurodegenerative diseases …
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Seminar – Brian O’Roak, PhD – Topic: Understanding the Molecular Basis of Neurodevelopmental DisordersBrian O’Roak, PhD Oregon Health & Science University Profile About the Speaker: Brian O’Roak is originally from California’s Central Valley. After earning a B.S. in Biology at CSU Fresno, he did his PhD studies at Yale University working with Dr. Matthew W. State in the Department of Genetics. He then went on for postdoctoral training in …
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Seminar – Harrison Gabel, PhD – “Dissecting Disruption of Gene Regulatory Mechanisms in Neurodevelopmental DisordersHarrison Gabel, PhD Washington University in St. Louis Profile About the Speaker: Harrison Gabel is an associate professor of neuroscience at Washington University in St Louis. Since establishing his laboratory in 2015, he has studied mechanisms of gene regulation in the brain and investigated how disruption of these mechanisms can lead to neurodevelopmental disorders. His group …
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Seminar – Lauren T. Ptomey, PhD, RD, LD – “Lifestyle Change and Brain Health in Individuals with Down Syndrome”Lauren T. Ptomey, PhD, RD, LD University of Kansas Medical Center Profile About the Speaker: Dr. Lauren Ptomey is an Associate Professor for the Department of Internal Medicine at the University of Kansas Medical Center. Dr. Ptomey’s primary research focus is the promotion of weight management and physical activity in individuals with intellectual and developmental disabilities, …
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Seminar – Francisco Quintana, PhD – “Astrocytic Epigenetic Memory Promotes Pathological States in the Central Nervous System”
Francisco Quintana, PhD Harvard University Profile About the Speaker: Francisco J. Quintana, Ph.D. is a Professor of Neurology at the Center for Neurologic Diseases, at Brigham and Women’s Hospital, Harvard Medical School, and an Associate Member at the Broad Institute of Harvard and MIT. Dr. Quintana, a graduate of the University of Buenos Aires (1999, Argentina), …
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Seminar – Anne Wheeler, PhD – Topic: Family and Maternal Well-Being Among Those Raising a Child With Special Health Care Needs
Anne Wheeler, PhD RTI International Profile About the Speaker: Anne Wheeler, PhD, has more than 20 years of clinical service and research experience focusing on behavior and development profiles of children and adolescents with special needs. She has conducted multiple studies focused on outcomes for individuals with genetic conditions and other special health care needs. She …
Down Syndrome Researchers
News
Waisman Down Syndrome News
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Down syndrome poster fair and research symposium will honor the Dewey family
The two-day event will take place at the Waisman Center on Thursday, November 5 and Friday, November 6.
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Ann Dewey Catalyst Fund helps launch major NIH grant to advance Down syndrome research
Research funding that supports early-stage ideas plays a critical role in advancing scientific discovery. A new National Institutes of Health (NIH) grant awarded to Waisman investigator André Sousa, PhD, associate professor of…
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New drug shows promise for treating Down syndrome-related brain changes
Individuals with Down syndrome have differences in how their brains form that cause intellectual disability. Down syndrome or trisomy 21 is the most common genetic cause of intellectual and developmental disability and…
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Lawrence University senior takes on language development research at Waisman
Giang Pham, a rising senior from Lawrence University in Appleton, is spending her second summer doing research at the Waisman Center University of Wisconsin–Madison as part of an internship program established and…
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Puerto Rico to become a site for The Alzheimer Biomarker Consortium – Down syndrome
Puerto Rican families have started traveling to Wisconsin to be part of the research study, but the goal is to build the infrastructure to eventually conduct the studies on the island.
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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.
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.