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For people with Down syndrome, family members, caregivers and professionals.
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The Trisomy 21 Research Society (T21RS) has developed several taskforces in response to the COVID-19 pandemic. The taskforces are studying COVID-19 infection and vaccination in people with D
On December 16, 2020, the Down Syndrome Medical Interest Group - USA issued a position statement on the COVID-19 vaccine. The position statement has been updated several times, most recently on Novemb
We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight.
On July 28, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Helping Children and Adults with Down Syndrome to Cope with Grief." The presenter was Rose Reif,
We discuss "I" statements in our social skills groups for individuals with Down syndrome. "I" statements are a way to share how we feel in a clear, calm, and respec
We go over "group rules" at the beginning of every in-person and virtual group for individuals with Down syndrome that we facilitate at the Adult Down Syndrome Center. We th
The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on March 28, 2021 as part of the Massachusetts Down Syndrome Congress 37th Annual Virtual Confer
As with all vaccines, there is the potential to experience side effects after getting the COVID-19 vaccine. This is true for people with and without Down syndrome. These side effects may include pain
When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We h
Since April, staff at the Adult Down Syndrome Center have been hosting online socials and social skills groups via Zoom. Our goal is to encourage social participation and engagement while we maintain
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 Synd
In September 2017, we started filming a video journal with Colleen, a woman with Down syndrome and Alzheimer's disease, and Bo, Colleen's sister and caregiver. Colleen was diagnosed wi
UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal com
*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 expos
The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) developed a screening tool called the NTG - Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD&
Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar
This booklet about dementia for families and carers was developed by Down's Syndrome Scotland. It was designed to help in the care and support of a person with Down syndrome and dementia. &
This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).
This list of resources was compiled by Ann Garcia and Grace O'Connor, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to Illinois residents - they are
The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care. G
An orientation book can be used for people with Alzheimer’s disease or dementia to help them remember things about their daily life.
This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.
This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.
We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l
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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