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Regression in Down Syndrome Support Group

Author: Eileen Quinn, MD - Moderator

The link below takes you to a closed Facebook page for families, caregivers, and professionals who support individuals with Down syndrome who have experienced or are experiencing regression. If you cl

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Preparing for Camp and Beyond Webinar Recording (8/29/2024)

Author: Hannah Facey, MD, Katie Frank, PhD, OTR/L, Helen Milligan, PT, DPT, PCS, Mary Stephens, MD, MPH, FAAFP, FAADM - Adult Down Syndrome Center and Jefferson Health

The video below is a recording of a webinar presented by Hannah Facey, MD, Katie Frank, PhD, OTR/L, Helen Milligan, PT, DPT, PCS, and Mary Stephens, MD, MPH, FAAFP, FAADM, on August 29, 2024.

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Recreational and Social Opportunities

Author: Jennifer Smid and Jenny Lutes - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by Jennifer Smid and Jenny Lutes, patient advocates at the Adult Down Syndrome Center. Many of the resources are specific to the greater Chicagoland area a

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Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, Hannah Graham, MD, and Farah Chaus, MD - Adult Down Syndrome Center

UPDATED MAY 2024 Recommendation The physicians at the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follo

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Mastering Social Skills for Success in the Workplace Webinar Recording (1/10/2024)

Author: Katie Frank, PhD, OTR/L and Abby Rowley, LCSW - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Katie Frank, PhD, OTR/L, and Abby Rowley, LCSW, on January 10, 2024. Description: Although people with Down syndrome can be excellent

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Changes in Gait (Ambulation, Walking)

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

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

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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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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   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

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Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

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Finding the Right Job for Me

Author: Katie Frank, PhD, OTR/L and Valerie Schlieder, OTD, OTR/L - Adult Down Syndrome Center

There are many things to think about when we are looking for a job that is right for us. The visual linked below describes a variety of potential jobs and job settings, provides a list of questions to

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Rules for Successful Workplace Conversations

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

The handout linked below shares information on appropriate conversations at work. It lists topics that are appropriate to discuss at work. It also explains that appropriate topics may depend on who we

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Tips for Being a Successful Employee

Author: Adult Down Syndrome Center

This handout shares tips for individuals with Down syndrome to be successful in the workplace.

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Story about Work

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

What should we do and how should we behave at work so that we are good employees? The story linked below answers those questions.  Story about Work   Access more employment resources

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Information Forms to Share with Hospitals and Clinics (Health Passports)

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

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Regression & Down Syndrome

Author: National Down Syndrome Society - Handout

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

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Employment Resources

Author: Ann Garcia and Jennifer Smid - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by the patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking

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College and Vocational Training Resources

Author: Ann Garcia and Jennifer Smid - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by Ann Garcia, patient advocate at the Adult Down Syndrome Center. Most of these resources are specific to the greater Chicagoland area and/or Illinois. If

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Long COVID in Adults with Intellectual Disabilities

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

A complication of having COVID-19 infection is a condition called long COVID (it has also been called long-haul COVID, chronic COVID, post-COVID conditions, and others). The National Task Group on Int

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

Author: Santoro et al. - 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. ECT can be frightening

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

Author: Santoro et al. - 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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Recommendations for Treatment of Mild to Moderate COVID-19 Infection

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

We have only seen or heard of a few cases of severe COVID-19 infection in our patients with Down syndrome who have received COVID-19 vaccines. Our experience has been consistent with the data

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Ableism at the Bedside: People with Intellectual Disabilities and COVID-19

Author: Chicoine et al. - The Journal of the American Board of Family Medicine

Abstract People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comor

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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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