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Ed Janoff, MD

June 22nd, 2020 by Global Down Syndrome Foundation

Ed Janoff, MDProfessor of Medicine, Immunology and Microbiology
University of Colorado Denver; Infectious Diseases

Dr. Janoff’s day job is to treat infectious diseases, and his passion is to prevent them. His research focuses on the development of systemic and mucosal immune responses, particularly antibodies, to provide primary protection against infection, infants, older adults and, more recently, people with Down Syndrome. He has studied mother-to-child transmission of HIV, pneumococcal pneumonia, influenza and, now, COVID-19. His goal is to understand and to teach others about what host factors are important in eliciting natural defense against respiratory infections and the protection provided by vaccines.

2020 Virtual Spring Performance | Be Beautiful Be Yourself Dance Program

June 12th, 2020 by Global Down Syndrome Foundation

GLOBAL Statement – Black Lives Matter Movement

June 5th, 2020 by Global Down Syndrome Foundation

Dear Families, Friends and Colleagues,

The Global Down Syndrome Foundation (GLOBAL) is deeply saddened by the senseless killing of George Floyd. We mourn for his family and every person who has been a victim of violent acts perpetrated in hateful discrimination.

Today we stand together with people from all over the world. We call for justice and demand systemic change that will protect us from racism, discrimination and brutality. Even beyond protection we demand real change that provides equity in research, medical care, education, the justice system, and every area that allows us freedom and the opportunity of good health, productivity, and happiness.

We maintain that if you believe in the inalienable rights for one group you must believe in them for all people. As Congresswoman Eleanor Holmes Norton said “You can’t be for women’s rights and not for disability rights. You can’t be for disability rights and not believe in racial equality. You can’t believe in racial equality and not in the LBGT community. The only true narrative is equity for all humankind.”

People with intellectual and developmental disabilities and their family members can relate to discrimination based on our own differences – and to a history that includes the Willowbrook State School and Aktion T4 murders.

At GLOBAL we condemn racism and discrimination in all forms. Black Lives Matter to us and to the world.

Wishing you health, safety and hope during these difficult but transformative times,
Michelle Sie Whitten and the GLOBAL Team

Make Your Voice Heard. We encourage you to help educate your communities by sharing information and resources on social media using the #BlackLivesMatter hashtag.

Lifespan of Resources will have a National and International Impact

Press Contacts:
GLOBAL: Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Ricerhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellardbhellard@imdsa.org | C: (513) 571-4186

DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.

The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.

“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”

“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”

“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”

Expanding Collaborations:

Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.

To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.

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.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

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Support our Dare to Ride Team! 2020 VIRTUAL Courage Classic

May 1st, 2020 by Global Down Syndrome Foundation

GLOBAL’s Dare to Ride Team for the 2020 Courage Classic VIRTUAL bike tour on July 18-19! Courage Classic is an annual fundraiser for Children’s Hospital Colorado, and GLOBAL’s Dare to Ride Team designates its funds to the Anna and John J. Sie Center for Down Syndrome at the hospital.

COVID-19 UPDATE: After careful consideration, Children’s Hospital Colorado Foundation has decided to transition this year’s Courage Classic bicycle tour to a virtual celebration. While we were hopeful this year’s Courage Classic would take place as usual in Copper Mountain, we agree that this is the best option given the current public health landscape.

Please consider supporting our Dare to Ride Team in one or more of the following ways:

    1. Join our Virtual Team

  • Our Dare to Ride Team consists of self-advocates, family members, and community supporters who are passionate about supporting medical care for children with Down syndrome.
  • Fueled by their network of supporters, each rider contributes to our team goal of $50,000 through online peer-to-peer fundraising. There is no registration fee for 2020.
  • This year’s tour format broadens the possibilities of participation – You can ride, spin, run, hike, walk, and more while social distancing outside or staying in, all to support the Sie Center! Register today!
  • 2. Donate to the Team

  • Cheer on those who are going the distance with a gift of $10, $25, $50, or $100! Any amount, small or large, has a great impact on our community.
  • Visit our Dare to Ride Team webpage to ensure that all funds raised support the Sie Center.
  • Support a specific rider or the team as a whole
    • THANK YOU! The Sie Center is part of the GLOBAL family and provides the highest standard of care to pediatric patients with Down syndrome from 28 states and 10 countries.

    • Fastest growing pediatric medical care center for children with Down syndrome based at the top ten children’s hospital, Children’s Hospital Colorado.
    • Provides best clinical care and therapeutic intervention to over 1,800 patients.
    • Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
    • Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
    • Collaborative and ground-breaking research on co-occurring conditions in children with Down syndrome such as aspiration and dysphagia (swallowing difficulties).
    • Other specialties offered range from physical, speech and occupational therapy, to education advocacy.

    If you have any questions, please contact events@globaldownsyndrome.org or 720-548-5619.

    100% of the proceeds will go to the lifesaving and life-changing care at the Sie Center.

    View Photos

140 Organizations Help Ensure People with Disabilities Will Receive Equitable Treatment under Colorado’s Newly Published “Critical Care Triage Guidance for Crisis Standards of Care”

Press Contacts:
GLOBAL: Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832
CCDC: Julie Reiskinjreiskin@ccdconline.org | C: (303) 667-4216
The Arc of Colorado: Christiano Sosacsosa@thearcofco.org | C: (970) 219-5925

DENVER, April 9, 2020 – The Governor’s Expert Emergency Epidemic Response Committee developed Crisis Standards of Care (CSC) after collaboration with experts and communities. Governor Polis has authorized the Colorado Department of Public Health and Environment to enact the standards when or if necessary.

The Colorado Cross Disability Coalition (CCDC), The Arc of Colorado, and over 140 organizations thank Gov. Jared Polis for ensuring that people with disabilities and other vulnerable populations receive equitable care under the CSC during the COVID-19 epidemic and other crisis situations.

Specifically, the revised CSC Plan provides standards that hospitals and other health care practitioners should implement once activated by the Chief Medical Officer for the Colorado Department of Public Health and Environment (CDPHE): (1) disallow medical “rationing” based on disability alone, (2) prevent other discrimination by establishing a blinded triage process, (3) specify that all hospitals in Colorado have a plan for providing effective communication accommodations with/for people who are disabled, and (4) clarify that no person who uses a ventilator as part of their regular care will have their ventilator taken away or receive less than equitable care.

“We are grateful to Gov. Polis and his team for their leadership in waging the war against COVID-19 and for ensuring that American civil rights and ethical values are upheld – even, and especially, when it comes to emergencies where medical care resources may become scarce and hard decisions must be made,” says Julie Reiskin, Executive Director of the CCDC.

“Every resident in this state deserves and should receive equitable care, even during the most uncertain of times,” says Lt. Governor Dianne Primavera. “Our Crisis Standards of Care guidelines are informed by ethicists, physicians, and experts, including those in the Colorado disability community who have been intimately involved with the response to the COVID-19 pandemic. When a crisis like this hits, we must protect everyone’s rights, civil liberties and health.”

“My family and I were appalled when we learned some states are creating policies that discriminate against people with disabilities and would absolutely jeopardize the life of my daughter,” says Dominic Capuano, father of a 12-year-old with Down syndrome from Littleton, Colorado. “We are just so grateful that our Governor, the CCDC, the Arc of Colorado, and the Global Down Syndrome Foundation are getting this out right before the peak of COVID-19 so there is no doubt that our Clarissa can get the care she needs if she needs it.”

While Reiskin acknowledges that some further revisions may be needed to the guidelines around care allocation on the basis of resource-utilization requirements/duration of mechanical ventilation, Colorado’s CSC Plan is authorized through executive order of the Governor for implementation by CDPHE’s Chief Medical Officer. Activation of crisis standards in the Plan provides the legal authorization for its implementation and use in health care settings, in addition to liability protections for those providers that follow its terms.

The Colorado CSC Plan provisions are also in stark contrast to those in other states, which in two cases specifically state that people with disabilities or medical conditions using a ventilator could have their ventilator taken away so that a more able-bodied person can be treated for COVID-19.

The Arc and the Center for Public Representation (CPR) have taken the lead with other disability organizations to file complaints to the U.S. Department of Health and Human Services Office of Civil Rights (OCR) against the states of Alabama, Kansas, Pennsylvania, Tennessee, and Washington for publishing or having COVID-19 related guidelines that would blatantly and illegally discriminate against people with disabilities.

Under the Alabama Department of Public Health’s Emergency Operations Plan, for children and adults, hospitals are ordered to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.”

In Kansas, the state recently developed a protocol called the “Toolkit for COVID-19.” The protocol specifically withholds life-saving treatment from patients based on their disability diagnosis – without an individualized assessment of their prospects for recovery – including people with “advanced untreatable neuromuscular disease,” people with “advanced or irreversible immunocompromise,” and people with some forms of cancer. In addition, hospitals could take away ventilators from individuals with disabilities or medical conditions who regularly use their own ventilators.

The Interim Pennsylvania Crisis Standards of Care for Pandemic Guidelines were just published on March 22, 2020 and discriminate against and jeopardize the lives of people with disabilities. For children and adults, the “scoring” of who gets care and who doesn’t takes into account long-term survival. The guidelines also discriminate against people with preexisting conditions that are disabilities and those with “severely life-limiting” co-morbid diagnoses, which can be left to interpretation.

The standing Guidelines for the Ethical Allocation of Scarce Resources in Tennessee exclude many people with disabilities from critical care, including ventilators. They further exclude people with metastatic cancer, some people with dementia, and some people with traumatic brain injury.

In Washington state, the Department of Health published descriptions of the goals and flow charts associated with emergency COVID-19 treatment that mirror the existing policy of the state-run University of Washington Medical Center (UWMC). Under this policy, the priority would be to uniformly treat people who are younger and healthier and to leave those who are older and sicker—including people with disabilities—to die.

According to The Arc and the CPR, all five states have protocols or guidelines in place that discriminate against people with disabilities and violate federal disability rights laws including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and Section 1557 of the Affordable Care Act (ACA), and places the numerous lives at serious risk.

“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” says Roger Severino, OCR Director. “HHS is committed to leaving no one behind during an emergency and helping health care providers meet that goal. Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.”

OCR has issued guidelines and statements underscoring that the policies associated with these states are aberrations in humanity and ethics, violate federal law, and that legal action can be taken if these policies are carried out.

The 140+ disability organizations that helped result in an ethical CSC guideline in Colorado includes the Colorado Cross Disability Coalition, The Arc of Colorado, arc Thrift Stores, Global Down Syndrome Foundation (GLOBAL), Anti-Defamation League (ADL), American Civil Liberties Union (ACLU), Atlantis Community, Inc., The Denver Foundation, Special Olympics Colorado, El Grupo Vida, One Colorado, Atlantis ADAPT, Disability Law Colorado, and Alliance Colorado.

Learn more about how you can help and where you can file a complaint if you believe you are facing discrimination in COVID-19 or other care.

The Colorado Cross-Disability Coalition (CCDC)
The Colorado Cross-Disability Coalition is the largest disability rights organization in Colorado that is run by and for people with all types of disabilities with a mission to advocate for social justice.

The Arc of Colorado
The Arc of Colorado promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

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. 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.

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).

An Important Resource for Families During Unprecedented and Uncertain Times

Press Contacts:
GLOBAL: Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Ricerhonda@ndsccenter.org | C: (678) 770-6641
NDSS: Michelle Saganmsagan@ndss.org | C: (202) 848-5409
LuMind IDSC: Marly Chevrettemchevrette@lumindidsc.org | C: (718) 825-1303
NTG: Matthew P. Janicki, Ph.Djanickimp@gmail.com | C: (518) 421-3520
DSMIG-USA: Emilie Perkinseperkins@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).

GLOBAL ROCK YOUR SOCKS CONTEST!

March 26th, 2020 by Global Down Syndrome Foundation

View Photos

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!

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

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@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).

World Down Syndrome Day – Denver

March 12th, 2020 by Global Down Syndrome Foundation

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