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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? Many organizations - including the Adult Down Syndrome Center - have compiled lists of ideas. Please see the links below!  Adult Down Syndrome Center 21 Healthy Ways to Celebrate WDSD (they apply all year long!) -  l

Advance Directives - Forms for Illinois Residents

Author: Illinois Department of Public Health - Website

An advance directive is a written statement you prepare that expresses how you want medical decisions made in the future should you not be able to make them yourself. Illinois law allows you to make four types of advance directives: a health care power of attorney; a living will; a mental h

Aging and Alzheimer's Disease in Adults with Down Syndrome Webinar Recording (11/10/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on November 10, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrome Center. Dr. Frank is the occupational therapist at the Center. In this presentation, they discu

Aging and Alzheimer's Disease in Adults with Down Syndrome Webinar Slides (11/10/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L

This document contains the slides from a webinar on aging and Alzheimer's disease in presented by Drs. Brian Chicoine and Katie Frank on 11/10/2020. Life expectancy is also discussed.

Aging and Down Syndrome: A Health & Well-Being Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society . According to the Introduction, "Adults with Down syndrome, along with their families and caregivers, need accurate information and education about what to anticipate as a part of growing older, so they can se

Aging and Life Expectancy

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

Today, people with Down syndrome (DS) are living longer and healthier than any other time in the past. In 1900 the life expectancy of people with DS was 9 years. By 1984, the life expectancy had increased to 28 years. Since then, the life expectancy of people with DS has increased to about

Alzheimer's Disease & Down Syndrome: A Practical Guidebook for Caregivers

Author: National Down Syndrome Society - Resource

The guidebook linked below was published by the National Down Syndrome Society "to help empower families and caregivers with knowledge about the connection between Down syndrome and Alzheimer's disease, suggestions about how to carefully and thoughtfully evaluate changes that may be

Alzheimer's Disease in Down Syndrome Presentation (2/26/2019)

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

The video below is a recording of a presentation called "Alzheimer's Disease in Down Syndrome" given by Brian Chicoine, MD on February 26, 2019. He provides an overview of Alzheimer's disease in adults with Down syndrome and covers topics including symptoms, diagnos

An International Survey on the Impact of COVID-19 in Individuals with Down Syndrome

Author: Huls et al. - EClinicalMedicine (2020)

Abstract Background:  Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19. Methods:  The T21RS COVID-19 Initiative launched an international survey for clinicians or caregivers 

Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract: Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether mammography screening strategies used for women without Down syndrome would benefit women with Down

Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Recommendations for breast cancer screening have varied over time and continue to vary. Organizations have different recommendations for when women should start being screened for breast cancer and how often they should be screened. Breast cancer is most commonly screened for with a mammogram, or an

Breast Cancer Screening for Women with Down Syndrome

Author: Chicoine, Roth, Chicoine, & Sulo - Intellectual and Developmental Disabilities (2015)

Abstract: This study examined mammogram reports of women with Down syndrome (DS) treated in the largest medical facility specifically serving adults with DS in the United States. Records of 684 women and results of 993 mammograms were reviewed, including 902 screening and 93 diagnostic mammograms. O

Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore, Rousse, Satge - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general population. Methods : We performed a literature review of cancer screening opportunities for adults with DS t

Celebrating Holidays During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

We have received several questions about how to celebrate holidays safely during the COVID-19 pandemic. Like many of our answers, there isn't a one-size-fits-all solution. Many factors need to be considered when deciding how and with whom to celebrate. While the holidays will certainly look

Clinical Characteristics of Individuals with Down Syndrome Deceased with COVID-19 in Italy - A Case Series

Author: Villani et al. - American Journal of Medical Genetics Part A (2020)

Abstract Background:  Persons with Down syndrome (DS) are presumed to be at high risk of severe CoVID-19 due to immune dysregulation and often compromised cardiopulmonary function. Aim of the present study is to assess epidemiological and clinical characteristics of individuals with DS dece

Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unrecognized symptomatic colon cancer). If there is an abnormality or symptom, we refer patients for colon

Coronavirus: What Is It and What Can I Do?

Author: The Arc Maryland and Maryland Developmental Disabilities Council

This document describes coronavirus (COVID-19) and steps we can take to keep ourselves and others safe.

COVID and Down Syndrome Webinar

Author: Dr. Brian Chicoine and Dr. Andre Strydom - Matthew Foundation Webinar

On January 8, 2021, Drs. Brian Chicoine and Andre Strydom presented a webinar hosted by the Matthew Foundation in collaboration with the Stanford Down Syndrome Research Center. They provided an update on the Trisomy 21 Research Society COVID and Down Syndrome Survey and discussed the DSMIG-USA Vacci

COVID-19 & Down Syndrome Resource

Author: National Consortium - DSMIG-USA, Global, LuMind IDSC, NDSC, NDSS, NTG

On March 1, 2021, a new resource on COVID-19 and Down syndrome was completed by a national consortium of organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), Na

COVID-19 Booster Shots and Third Doses

Author: Adult Down Syndrome Center - Resource

UPDATED 10/21/2021 : The CDC shared booster shot recommendations for the Moderna and Johnson & Johnson COVID-19 vaccines. The statement can be found at this link . 10/15/2021 : According to the CDC , you can get a flu vaccine at the same time you get a COVID-19 vaccine, including a COVID-19

COVID-19 Information By and For People with Disabilities [English]

Author: Green Mountain Self-Advocates

This handout uses plain language to describe COVID-19, how it spreads, how to avoid getting it, and what to do if we get it.

COVID-19 Mortality Risk in Down Syndrome: Results from a Cohort Study of 8 Million Adults

Author: Clift et al. - Annals of Internal Medicine (2020)

The article linked below describes the findings of a study that evaluated Down syndrome as a risk factor for death from COVID-19 through an analysis of individual-level data in a cohort study of 8.26 million adults. It was published at on October 21, 2020. Full-text (no cost):  h

COVID-19 Resources

Author: Adult Down Syndrome Center - Resource List

Many organizations are compiling COVID-19 resource lists. We have included links to some of them below.  The amount of information about COVID-19 can be overwhelming and can cause anxiety and stress. Our mental health is just as important as our physical health during this time. We recommen

COVID-19 Testing Sites

Author: Adult Down Syndrome Center - Resource List

*Please note: This article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was exposed to COVID-19 previously and developed some level of immunity to COVID-19 .  We have recei

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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.