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For people with Down syndrome, family members, caregivers and professionals.

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Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? We have compiled a list of some ideas below! There are ideas for arts and crafts , cooking , education/learning , fitness and physical

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Healthy Ways to Celebrate World Down Syndrome Day

Author: Adult Down Syndrome Center

This handout lists 21 activities you can do to promote your physical, mental, and social health on World Down Syndrome Day!

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Getting an X-Ray Visual

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

This Getting an X-Ray visual  explains what happens when we get an x-ray. This visual can help individuals with Down syndrome know what to expect when going for an x-ray. 

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Getting an EEG Visual

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

This Getting an EEG visual  explains what happens when we have an electroencephalogram (EEG) done. It can help individuals with Down syndrome know what to expect when going for an EEG.

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Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   In January 2023, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for fam

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Getting My Blood Drawn Visual

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

This Getting My Blood Drawn visual  explains what happens when we have a blood test done.    This visual can help individuals with Down syndrome know what to expect when goi

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Healthcare Experiences of Patients With Down Syndrome Who Are Black, African American, of African Descent, or of Mixed Race

Author: Krell et al. - American Journal of Medical Genetics Part A (2022)

Abstract Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpos

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Financial Impact of a Specialized Down Syndrome Clinic: Implications and Support for Institutional Support of Specialty Care Clinics

Author: VanZant & Vellody - American Journal of Medical Genetics, Part A

Abstract Individuals with Down syndrome (DS) have specific health care needs and require additional screening and surveillance for commonly associated conditions. The American Academy of Pediatrics (A

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Resources on Executive Functioning and Down Syndrome

Author: Adult Down Syndrome Center - Resource List

Executive functioning (or executive function) describes skills and mental processes that enables us to set goals, make plans, and manage daily life. Working memory, flexible thinking, self-control, an

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Benefits of Visual Supports Video

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Visuals can assist people with and without Down syndrome in many ways. We do not think that they are something that we "outgrow." In fact, many of us use visual supports (such as app

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DSMIG-USA Speaker Series for Health Care Professionals

Author: Down Syndrome Medical Interest Group - USA - Continuing Education for Professionals

  Click here to access the Speaker Series   Overview (from the DSMIG-USA website) The Down Syndrome Medical Interest Group-USA (DSMIG-USA) Speaker Series consists of webinars and end

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Bias in the Health Care System: Advocating for People with Down Syndrome Webinar (10/19/2022)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi

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Common Characteristics of Adolescents and Adults with Down Syndrome

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

"If you have met one person with Down syndrome, you have met one person with Down syndrome" is a sentiment often shared in the Down syndrome community. We certainly know this idea ap

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321go! Guide

Author: National Down Syndrome Society - Healthy Living Resource

321go! is a resource provided by the National Down Syndrome Society (NDSS). The guide is "a fun and easy set of 3 daily goals and 21 challenges that can help you make healthy choices"

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People Living with Down Syndrome in the USA, Europe, Australia, and New Zealand: Births and Population

Author: deGraff, Buckley, and Skotko - Fact Sheets

The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe.  USA Fact Sheet   Last updated Novemb

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Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

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Using First/Then Boards

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

We like to use visual supports to set or manage expectations. One type of visual support that can be helpful is a first/then board. When using a visual support, there can be words, pictures, or a comb

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Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

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Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

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Visits to a Doctor's Office

Author: Adult Down Syndrome Center

This visual support explains what to expect when you go to a doctor's appointment.

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Individualized Visual Schedules

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Visuals tend to be most effective when they are individualized. What works for one person may be different than what works for another person. Schedules are one example of a type of visual that may va

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Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

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Vitamins and Supplements

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

We received the following question:  What vitamins and supplements would you recommend for adults 18 with Down syndrome? I have read that 2x the recommended daily dose of fish oil has been li

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Taking Charge of My Appointment

Author: Adult Down Syndrome Center

Individuals with Down syndrome can use this handout before, during, and after health appointments to help them advocate for their health.

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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