Archive for March, 2020

An Important Resource for Families During Unprecedented and Uncertain Times

Press Contacts:
GLOBAL: Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Rice | rhonda@ndsccenter.org | C: (678) 770-6641
NDSS: Michelle Sagan | msagan@ndss.org | C: (202) 848-5409
LuMind IDSC: Marly Chevrette | mchevrette@lumindidsc.org | C: (718) 825-1303
NTG: Matthew P. Janicki, Ph.D | janickimp@gmail.com | C: (518) 421-3520
DSMIG-USA: Emilie Perkins | eperkins@raybourn.com

PLYMOUTH, Minn., DENVER, BURLINGTON, Mass., ATLANTA, NEW YORK CITY, HAMDEN, Conn. March 27, 2020 – Today, an important Q&A on COVID-19 and Down syndrome was published by a consortium of national Down syndrome 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), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

“The unprecedented spread of the Coronavirus Disease 2019 (COVID-19) presents the world with a unique challenge and, in our case, calls for a united response to better understand its impact on the Down syndrome community,” says a consortium spokesperson. “While there are still many unknowns, we believe this Q&A is an important resource for individuals with Down syndrome and their families, and we will provide updates as we learn more.”

This new resource was reviewed by numerous clinicians, advocacy organizations and family members of individuals with Down syndrome, and includes answers to the following general questions:

• How can I help prevent the spread of the virus?
• What common symptoms should I look for?
• What should I consider when it comes to decisions made by, or on behalf of my loved one with Down syndrome?

A key takeaway from the Q&A is that many people with Down syndrome are considered “high risk.” Based on the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), people categorized as “high risk” include those with “underlying medical conditions” that people with Down syndrome are more likely to have. Some examples are lung disease and respiratory difficulties (e.g. asthma, sleep apnea), ongoing heart disease or heart failure, obesity, diabetes, or having lower immune function (e.g. people undergoing cancer treatment or taking drugs for rheumatoid arthritis or lupus that lower immune function).

“As a parent of a young child with Down syndrome I am wondering if he is higher risk and what that even means,” shares Kim Knight of Marietta, GA. “We are glad this resource will give us some advice specific to Down syndrome.”

“I have a child who is forty and I’m not sure how to explain why we aren’t following his routine anymore, what the new routine should be, or if he should see his cousin across town,” said
Jacqueline Olimpio from Olney Maryland. “I am grateful for any advice that can help me navigate this difficult time.”

Q&A organizers are committed to updating this important resource in the following weeks as more information becomes available about COVID-19, regulations related to the disease, and how this affects people with Down syndrome.

This Q&A is informational only and not intended to provide medical advice or related advice. This Q&A should NOT be considered a substitute for the advice of medical professionals or other professionals. Consult with your doctor or other healthcare professional(s) for medical advice.

The Q&A resource has the additional support of the following national and international organizations: Down Syndrome Affiliates in Action, Gigi’s Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation, and T21RS.

To access the resource, families, friends and professionals can visit any of the consortium member websites hyperlinked below, and download a PDF or share the PDF by email, text or social media.

Families, friends, and professionals can visit any of the consortium member websites hyperlinked below to download a PDF or share the PDF by email, text, or social media. An Expanded Version and an Abbreviated Version of the Q&A are available in English and a Spanish version will be available in the next two weeks.

About the National Consortium

Down Syndrome Medical Interest Group-USA (DSMIG-USA)
DSMIG-USA is a group of health professionals committed to promoting the optimal health care and wellness of individuals with DS across the lifespan.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

LuMind IDSC Foundation (LuMind IDSC)
The LuMind IDSC Foundation is a non-profit organization that accelerates research and empowers families to improve health, independence and opportunities for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society (NDSS)
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Task Group of Intellectual Disabilities and Dementia Practices (NTG)
To advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer’s disease and dementias.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

Win two VIP tickets to Global’s star-studded
Be Beautiful Be Yourself Fashion Show!

Check out how Global Ambassador Louie Rotella ROCKS HIS SOCKS for Global! Winners will get to see him in action on the Fashion Show Runway Saturday, October 3rd.

Just submit a 30 second video of your BEST dance moves! We’ll do a drawing next Friday, April 3, and announce the winner.

COVID-19 may stop us from gathering in person, but it won’t stop us from ROCKING OUR SOCKS!

COVID-19 & Down Syndrome

Some things to consider if you have Down syndrome or a loved one with Down syndrome

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, March 12, 2020 – Global and our affiliates have received numerous inquiries about whether or not people with Down syndrome are more at risk than typical people when it comes to exposure to the coronavirus disease (COVID-19). Many inquiries are related to health risks and many are also related to spring break travel on planes. With coronavirus disease (COVID-19) being categorized as an official pandemic by the World Health Organization, and after discussing with our affiliates, at this moment in time we are comfortable providing the following information.

GLOBAL UPDATE ON THE CORONAVIRUS DISEASE (COVID-19)

1. Are all people with Down syndrome “High Risk”?

While there is no evidence about how people with Down syndrome are affected by coronavirus disease (COVID-19) versus the typical population, the National Institutes of Health (NIH) and Center for Disease Control (CDC) have categorized certain groups of people as “high risk” in terms of how coronavirus disease (COVID-19) can negatively affect their health:

a. Older adults

b. People who have serious chronic medical conditions like: Heart disease, Diabetes, Obesity, Lung disease, and/or Respiratory Difficulties

2. Some Precautions to Consider from the NIH & CDC:

We do know that people with Down syndrome are more likely than typical people to have such chronic medical conditions listed above, and as such, following the NIH and CDC precautions should be considered. You can read about those precautions on the NIH and CDC government websites. For individuals considered “high risk” the websites both recommend “Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships” amongst many other recommendations.

3. Extra Precautions to Consider Based on Research

There is research from the CDC and the American Academy of Pediatrics that points to people with Down syndrome being more likely to develop complications due to respiratory viral infections including H1N1 and RSV, and increased rates of hospitalization. Given this research, if you as an individual with Down syndrome, your child with Down syndrome, or your dependent adult with Down syndrome has a respiratory infection, is just recovering from a respiratory infection, has chronic respiratory issues or pulmonary viral infections, you may want to consider taking the same precautions that would apply to someone who is “high risk.”

Some Basic But Important CDC and NIH recommendations to Consider

1. Avoid close contact and stay home when sick – Read about steps to preventing the illness via the CDC website. Please take note:

Stay home when you are feeling sick (e.g. fever, cough, itchy throat, chills, etc.).

Notify a healthcare provider if you are experiencing symptoms.

Put in extra measures to put more physical distance between yourself and others.

2. Practice good hygiene. Read about the importance of handwashing via the CDC website. Below are some highlights:

Wash your hands with soap and water regularly for 20 seconds.

Practice cough and sneezing etiquette, always cover your mouth and nose when sneezing, coughing with a tissue or into the crook of your elbow.

Avoid touching your eyes, nose, and mouth.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

In response to the global spread of the Coronavirus (COVID-19) in the United States, the Global Down Syndrome Foundation is closely monitoring and responding to the situation, taking into account that many in our Down syndrome community are considered “High Risk.”

As a precautionary and proactive measure, the Global team has decided to cancel/postpone public events for World Down Syndrome Day in Colorado.

Global’s World Down Syndrome Day Celebration at the Colorado State Capitol on Wednesday, March 18 has been canceled. While the coronavirus is stopping us from gathering, it will not stop us from celebrating our beautiful Down syndrome community! Stay tuned for ways to engage with us virtually on this special day!

We truly appreciate your support and understanding as we respond to this public health crisis. Stay tuned for more information. If you have any questions, please contact: events@globaldownsyndrome.org or call 303-321-6277.

Gratefully,
The Global Team