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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!

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

Global grants fund a total of 80 jobs for people with Down syndrome in the US and Peru

At DSAIA Leadership Conference; Keynote speaker Zack Gottsagen and Global President & CEO Michelle Sie Whitten with awardees (L-R): Down Syndrome Association of Greater St. Louis, Down Syndrome of Louisville, Down Syndrome Association of Connecticut, Down Syndrome Association of West Michigan, Down Syndrome Association of Delaware (Not Pictured: Down Syndrome Association of Wisconsin, Down Syndrome Network Arizona, Sociedad Peruana de Sindrome Down)

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

Orlando, FL and DENVER, CO February 28, 2020 – Today, Global Down Syndrome Foundation (Global) announced eight new Global Self-Advocate Employment Initiative Grant winners at the national Down Syndrome Affiliates in Action (DSAIA) Annual Leadership Conference.

“We started this grant program in 2016 after attending a DSAIA conference and realized that many Down syndrome organizations cannot afford to employ people with the condition despite advocating for other companies to do so,” said Michelle Sie Whitten, President and CEO of Global. “To address that, we worked with our members on this grant program and we are proud to have supported 80 self-advocates jobs from 20 states and one in Peru! I’m so proud of our team and our members for making this all a reality in such a short time.”

The 2020 winners are: Down Syndrome Association of Connecticut, Down Syndrome Association of Delaware, Down Syndrome Association of Greater St. Louis, Down Syndrome Association of West Michigan, Down Syndrome Association of Wisconsin, Down Syndrome Network (AZ), Down Syndrome of Louisville, and Sociedad Peruana de Sindrome Down (Peru). This year’s Global Self-Advocate Employment Initiative Grants will underwrite self-advocate volunteers transitioning to paid contractors or staff, expansion of hours for self-advocate staff, work-place training, and public speaking training.

Past winners appreciate that Global’s grants can be multi-year, and that many grants have led to leveraged funding.

“Our organization is dedicated to helping our adults with Down syndrome develop vocational and professional skills. We have been fortunate to earn more than one of Global’s transformative employment grants, allowing us to train, prepare, and hire self-advocates for employment especially in our hospital clinic,” says Lauren Camp Gates, Executive Director of Down Syndrome Association of Delaware.

Erin Suelmann, Executive Director of Down Syndrome Association of Greater St. Louis agrees, “Global has helped us expand our ‘Ready to Work Employment Initiative’ programs. In 2018, Global’s grant empowered us to hire an Employment Assistant Ambassador and now we have on-going funding for that position. This year we are so grateful for another grant to grow our staff and hire a Peer Trainer for Social Enterprise.”

2020 grant winners received their award certificates from Whitten and DSAIA conference keynote speaker, Zack Gottsagen. Gottsagen, who starred in the award-winning hit indie film, The Peanut Butter Falcon, is an example of a hardworking individual with Down syndrome excelling in his career. Whitten is an executive producer of The Peanut Butter Falcon and led Global Members in marketing initiatives to ensure the film’s distribution success.

“I wanted to act from the time I was three,” said Gottsagen. “My mom listened to me so I took acting lessons for years. Then two acting coaches wrote a film for me to star in and I won awards for my acting at SXSW and Palm Springs Film Festivals. I showed up, worked hard, got this big break, and presented at the Oscars. It is important that parents and organizations have high expectations and provide training to children and adults with Down syndrome.”

Global membership benefits include supporting life-saving and transformative initiatives, Global’s award-winning magazine Down Syndrome WorldTM, Down syndrome expert webinars, and two first-in-kind grant programs – Global Membership Educational Grants and Global Membership Self-Advocate Employment Initiative Grants. To become a Global Down Syndrome Foundation member or to learn more about member benefits, visit: https://www.globaldownsyndrome.org/become-a-member/.

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).

What Parents Need to Know About Life Expectancy & Pediatric Medical Care

February 27th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 4 of 4


Dr. Fran Hickey, a parent to a son with Down Syndrome with over 30 years experience caring for children with Down Syndrome, provides insights and important takeaways


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), approximately 6,000 people are born with Down syndrome in the United States every year. The average life expectancy of a person with Down syndrome has more than doubled since the 1980s – from 25 years to 60 years today. The dramatic increase in lifespan for people with Down syndrome over the last 30 odd years can be attributed to many factors. First, there was the dismantling of inhumane institutions in the 1980s and early 1990s where people with intellectual and developmental disabilities to be placed in institutions where they were not provided basic medical care, let alone life-saving procedures such as appendectomies or heart surgery. In fact, at the notorious Willowbrook State School on Staten Island, New York, there was no plumbing and residents were injected with diseases in an attempt to discover cures over a sixteen-year period. It was finally closed in 1987.

With deinstitutionalization came more inclusion at home, in schools, and eventually society – all of which also play a role in health outcomes. In addition, since an estimated 40-50% of children with Down syndrome are born with a congenital heart defect, another big factor leading to increased lifespan was advancement in cardiac repair and surgery.

While basic and even clinical research has languished for people with Down syndrome even until recently, medical care has progressed significantly over these same decades. An important resource that has made a substantial difference in health outcomes is the publication of Health Supervision for Children with Down Syndrome by the American Academy of Pediatrics (AAP).

“The best thing a parent can do for their child with Down syndrome is to utilize the pediatric care guidelines set by American Academy of Pediatrics,” says Dr. Fran Hickey, a beloved Down syndrome expert and the medical director of the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

The Sie Center, part of the Crnic Institute for Down Syndrome and an affiliate of the Global Down Syndrome Foundation, was established in November 2010 and now has nine weekly clinics including a feeding clinic, sleep clinic, education clinic, and mental wellness clinic. The center is also home to other renowned medical providers including Patricia C. Winders, PT; Dee Daniels, RN, MSN, CPNP; and Dr. Lina Patel, PsyD. Together, they serve over 1,800 patients from 28 states and 10 countries.

THE NEED FOR A DOWN SYNDROME-SPECIFIC RESOURCE

People with Down syndrome are born with three copies of chromosome 21 instead of two. The result is a dramatically different disease profile whereby people with Down syndrome are highly predisposed to certain diseases (e.g. Alzheimer’s disease and autoimmune diseases) and highly protected from others (e.g. solid tumor cancers, certain heart attacks and stroke). As such they require different medical care visits compared to those in the general population or other intellectual and developmental disabilities.

Despite being underfunded, the Down syndrome community has benefitted from the guidelines organized between 1981 and 1999 by dedicated clinicians, many from the Down Syndrome Medical Interest Group, who drew primarily on their vast experience with this patient population. Then in 2000, with the leadership of Dr. Marilyn Bull and many other contributors, the American Academy of Pediatrics used its resources, vast network, and peer reviewed vetting apparatus to create its first Health Supervision for Children with Down Syndrome. The guideline was last updated in 2011.

The AAP’s Health Supervision for Children with Down Syndrome is a comprehensive report of healthcare guidelines for children with Down syndrome from birth to 21 years of age. While it is designed for the pediatrician and subspecialists caring for child with Down syndrome, there is an 11-page family-friendly version also published by the AAP called “Health Care Information for Families of Children with Down Syndrome.”

A RENOWNED AND BELOVED DOCTOR

Dr. Hickey completed his undergraduate degree at Harvard University and his medical degree at University of Cincinnati College of Medicine, and his internship and residency at Cincinnati Children’s Hospital where he was mentored by Dr. Bonnie Patterson, a national leader in Down syndrome founded the renowned Thomas Center for Down Syndrome and DSMIG. Dr. Hickey is recognized as one of “America’s Top Doctors,” and has received numerous awards including the Maxwell J. Schleifer Distinguished Service Award from Exceptional Parenting Magazine, The Ross Award for Excellence in Ambulatory Pediatrics, the Senior Resident Teaching Award in Pediatrics, the Professional of the Year award, and Lifetime Achievement Award from the Down Syndrome Association of Greater Cincinnati. He and his wife Kris have four children, one of whom has the dual diagnosis of Down syndrome and autism.

Today, Dr. Hickey and his multi-disciplinary team of experts at the Sie Center for Down Syndrome at Children’s Hospital Colorado provide excellent medical care and conduct many research projects related to improving healthcare outcomes through improved medical care therapies, mental wellness and school interventions and therapies, as well as through applying the AAP Health Supervision for Children with Down Syndrome guidelines.

Dr. Hickey encourages parents to work closely with their medical team to determine the proper healthcare plan for their child’s specific needs. “Anyone who is providing care to a child or adolescent with Down syndrome should be aware of common co-occurring conditions and have a specific plan to monitor and evaluate the child’s health,” says Dr. Hickey.

As a supplement to the AAP pediatric guidelines, Dr. Hickey and his “Dream Team” of experts at the Sie Center have developed a simple one-page check-list and chart based on the AAP guidelines that lays out a roadmap of appointments, screenings, vaccines, and treatments. “The AAP has endorsed these guidelines to maximize the health of our children,” Dr. Hickey says. “They are so important to follow as long-term health guidelines and to allow children with Down syndrome to reach their health potential.”

“The AAP guidelines and Sie Center’s guidelines check-list are so important because they provide medical professionals a roadmap on how children with Down syndrome need different medical care,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “For example, a typical child may only get a hearing test if there is some evidence that child is not hearing. For children with Down syndrome who tend to have inner ear issues, they must get tested every year. You can imagine what not hearing does to our children’s lives.”

INSIGHTS AND TAKEAWAYS FROM DR. HICKEY

The AAP 2011 guidelines can be broken down into medical areas of focus and by age group. In september 2019, Dr. Hickey provided an informative webinar to over 100 attendees about the guidelines. Below are key insights and takeaways from Dr. Hickey’s webinar.

NEONATAL (BIRTH TO ONE MONTH)

In an infant’s first 24 hours of life, he/she will receive a physical examination for the state newborn screening, a public health service that tests for a variety of health disorders, including Down syndrome. If there was no prenatal testing and if the clinician feels enough criteria are present on physical examination to diagnose the baby with Down syndrome, then a blood sample should be sent for chromosome evaluation. Providing a diagnosis at birth should be done with care and counseling, and resources should be offered at the appropriate time.

There is a high rate of neonatal complications for newborns with Down syndrome; the overwhelming majority of which can be addressed and/or corrected. According to an article published by the Sie Center representing data from the Colorado mountain (an elevated region), an estimated 73% of newborns require a stay in a Neonatal Intensive Care Unit (NICU),which underscores the importance of appropriate medical readiness and intervention from birth to discharge. Well over half of these NICU stays are driven by additional oxygen needs, and approximately 60% require phototherapy to treat jaundice. Another driver of NICU stays are feeding problems which may require a nasogastric tube (NG tube).

CONGENITAL HEART DISEASE & PULMONARY HYPERTENSION

Congenital heart disease (CHD) and pulmonary hypertension (PH) go hand-in-hand. Since almost half of the babies with Down syndrome are born with a CHD, a newborn echocardiogram is imperative. This will show if and which exact heart abnormalities exist. In addition, every newborn should be evaluated for PH. PH compromises blood flow from the heart to the lungs due to tiny arteries in the lungs becoming narrowed, blocked or destroyed. This slowing or blockage of blood flow to the lungs puts undue stress on the heart.

An estimated 20% of 50% of babies with Down syndrome having CHD will need surgery within the first 4 months. The advancement of infant heart surgery has seen outcomes for all patients with CHD improve dramatically. Even with a more serious CHD that requires open heart surgery, the survival rate is well above 90% if caught in time.

Compared to the typical population with CHD, the prevalence of PH is still high. Signs to look for are hypoxia, polycythemia, obstructive sleep apnea, and feeding problems and aspiration. Keeping children with Down syndrome appropriately oxygenated is integral for prevention and treatment of PH.

HEARING

In the United States, all newborns get a newborn hearing screen. Approximately 20% of newborns with Down syndrome will initially fail. But only 2% have congenital hearing loss. The guidelines recommend a rescreen at 6 months with a Behavioral Audiogram. Hearing tests should continue every six months until 3 years of age after which children with Down syndrome should get their hearing tested annually.

An estimated 30-40% of infants with Down syndrome have stenotic ear canals (narrow ear canals), which makes it difficult to see the tympanic membrane and evaluate hearing. If a child with Down syndrome has stenotic ear canals, he/she should see an otolaryngologist or Ears, Nose, Throat (ENT) specialist for an otoscope with a microscope in order to avoid undiagnosed serous. otitis media and subsequent hearing loss. Clearly, hearing loss will not only impede the development of speech, but may also affect many other developmental milestones.

LEUKEMIA

Every newborn with Down syndrome should have a hematology test called a “complete blood count” (CBC). While only 2% of people with Down syndrome will have leukemia, this is still 10x or even 400x more frequent than in the typical population and more specialized treatments for children with Down syndrome are needed based on their. potentially different anatomical structure and reactions to medications.

Up to 30% of newborns with Down syndrome present with Transient Myeloproliferative Disorder (TMD). Twenty percent of those 30% will go on to get diagnosed with leukemia. Counseling the parents during such a diagnosis is very important. The two leukemia’s children with Down syndrome are more susceptible to are Acute Megakaryoblastic Leukemia (AMKL), a rare form of myeloid leukemia (ages 1-5), and B-cell Acute Lymphoblastic Leukemia (ALL), a common childhood leukemia (primarily ages 5 to 20).

AUTOIMMUNE DISORDERS

It’s estimated that up to 70% of people with Down syndrome have one or more autoimmune disorder. At birth, babies have a newborn state screen that includes measuring thyroid with a test called T4. If a newborn fails this test, they will then have a thyroid stimulating hormone (TSH) test.

Because of the prevalence of autoimmune disorders (e.g. abnormal thyroid, hypothyroidism, diabetes mellitus, alopecia areata) the AAP guidelines recommend TSH screenings at 6, 12, and 18 months. Then starting at the age of 2, testing every year unless there are symptoms of thyroid dysfunction, in which case an immediate test should be administered.

The AAP guidelines have many other important recommendations including testing or obstructive sleep apnea (OSA) at 4 years old (or earlier if there are symptom). Over 60% of children with Down syndrome test positive to OSA whereby they are not breathing during certain times while sleeping. Respiratory illnesses are the cause of 80% of admissions to the hospital for children with Down syndrome, so mitigating exposure and treating ailments quickly is paramount.

The AAP guidelines cover ophthalmology, autism, gastrointestinal issues, and many other important areas. It is exciting to know that the AAP is working on an updated version, that will no doubt provide clinicians and families even more ways in which to ensure the good health of children with Down syndrome.

“While there are challenges, the developments in recent years paint a hopeful picture of medical care for people with Down syndrome, allowing us to help children reach their potential and enjoy their life,” says Dr. Hickey.

As a membership benefit, Global Down Syndrome Foundation hosts a quarterly webinar series on medical and educational topics such as Down syndrome research, healthcare, advocacy, and more. See a recap of Dr. Hickey’s September 2019 webinar on Pediatric Medical Care here: www.globaldownsyndrome.org/globalwebinar-series-fall-2019-recap/


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

Global Webinar – Medical Care Guidelines

January 9th, 2020 by Global Down Syndrome Foundation

Global Medical Care Guidelines for Adults with Down Syndrome: A Legacy Supporter Update!


What You Need to Know


Overview & Speakers:

We look forward to sharing our progress and to providing a sneak peek with you at our exclusive webinar for our generous Global Members and guideline supporters. This webinar is in addition to our quarterly Global Membership webinar series and is an exclusive, free benefit to YOU our Legacy Supporters. In this webinar Global President and CEO, Michelle Sie Whitten, and Director of Adult Initiatives & Special Projects, Bryn Gelaro, to present on the following topics:

Results from our focus groups

Success stories (already)

PICOTS & Grade System framework

Managing Expectations – what the guidelines do and do not include

Overachieving! Possible Toolkits…

Distribution, Education & Outreach

How you can help

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA is the Co-Founder, President and CEO of the Global Down Syndrome Foundation (Global). Global is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. Prior to her career in the non-profit sector, Michelle was a cable TV pioneer in East Asia working for Liberty Media Corporation and Starz Encore. Her academic career was focused on international security and diplomacy and she holds a Masters degree and business certificate from Harvard University. She graduated Magna Cum Laude with a Bachelors degree from Tufts University and studied Mandarin Chinese and Women Studies at Peking University. Michelle is married to Tom, a British curator of Chinese contemporary art and they have two adorable kids, one of whom has Down syndrome.
Bryn

Bryn Gelaro, LSW

Bryn Gelaro, LSW is a Licensed Social Worker with background in behavioral health with adults with Down syndrome. Bryn was a consultant for the Global Down Syndrome Foundation from 2015 to 2017 prior to her current position as the Director of Adult Initiatives and Special Projects. Her work includes supporting Global’s efforts to open a World Class Medical Clinic for adults with Down syndrome and overseeing international projects, including in Uganda and Albania. Bryn is the co-Author and project manager for the Global Medical Care Guidelines for Adults with Down Syndrome overseeing the communication between work group members, maintaining guideline deliverables and timeline, and managing the edits of the guideline manuscript. Bryn earned her Bachelor of Science in Psychology from the Pennsylvania State University and a Masters degree in social work from the University of Chicago. She completed her Master’s graduate field training at the Adult Down Syndrome Clinic in Chicago where she was fortunate to have mentorship from Dr. Dennis McGuire and Dr. Brian Chicoine.

Powerpoint Presentation: Click to Download


Important Notice

The Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Funding Increases for the National Institutes of Health (NIH) and Down Syndrome Research Lauded by Global Down Syndrome Foundation

Photo by Marleen Van den Neste

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

December 22, 2019, Denver, CO– On Friday, President Trump signed a $1.4 trillion spending package that will fund the government until September 2020 and averted a government shutdown. Earlier in the week, the package passed the House and Senate with victories and compromises on both sides of the aisle.

“Finally, we have secured the funds and resources for our military — our national security,” said Senator Richard Shelby (R-AL), Chairman of the Senate Appropriations Committee who also heads the appropriations subcommittee on defense. “This package includes a significant increase in defense funding and the largest pay raise in a decade for our men and women in uniform.”

Chairwoman of the House Appropriations Committee Nita Lowey was also pleased with the results, “I am particularly proud that House Democrats prevailed in securing historic investments For the People, including record funding levels for Head Start and lifesaving medical research at NIH, and in funding priorities vital to our shared security, like gun violence prevention research and election security grants to states.”

Included in the spending package was legislation providing a 7% increase or $2.6 billion more funding to the NIH for an annualized budget of $41.7 billion. Legislation also highlights a “minimum” of $60 million for Down syndrome research in FY2020 through NIH’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) trans-NIH project. This would bring total Down syndrome research funding up to $98 million for the year.

Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, issued the following statement:

“Global thanks the Administration, our champions in Congress, and leadership at NIH who made Down syndrome research and medical care a priority resulting in the NIH INCLUDE project. It is important to note that this result reflects a decade of hard work and two decades of inequity in funding for our Down syndrome community.

The key turning point was the Labor, Health and Human Services, Education and Related Agencies House Appropriations Subcommittee hearing on Down syndrome research in October 2017. At the hearing, testimony from Global Ambassador, Frank Stephens, received a standing ovation, 100% bipartisan support, and over 150 million views on C-Span and other outlets.

This first ever hearing of its kind and testimonies were made possible by Congresswoman Cathy McMorris Rodgers, Chairwoman Rosa DeLauro, and Ranking Member Tom Cole with further support from Senators Roy Blunt, Patty Murray, and so many others from both sides of the aisle.

The FY2020 budget for NIH and Down syndrome research signals a clear message that the longevity and improved health outcomes of people with Down syndrome is important, and that their unique disease experience can also benefit others without Down syndrome. Global is proud and incredibly grateful to have worked with the Administration, NIH, and Congress to secure the funding for this research.”

The INCLUDE project focuses on diseases and conditions like Alzheimer’s, blood cancers, and autoimmune disorders that have a higher prevalence among individuals with an extra copy of chromosome 21 as well as conditions like solid tumor cancers that are rare among individuals with Down syndrome. The INCLUDE Steering Committee is chaired by Dr. Lawrence Tabak, NIH Principal Deputy Director in partnership with Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and Dr. Gary Gibbons, Director, National Heart, Lung, and Blood Institute (NHLBI) as co-chairs.

To learn more about the NIH INCLUDE project, visit https://www.nih.gov/include-project/include-project-research-plan#leadership

To learn more about the Crnic Institute for Down Syndrome, visit https://medschool.cuanschutz.edu/linda-crnic-institute

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of Research, Medical Care, Education, and Advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

Global Webinar Series – Winter 2019 Recap

December 16th, 2019 by Global Down Syndrome Foundation

WINTER 2019

CPAP, Hearing Aids, & Glasses, Oh My! How to Help my Child & Adult Wear their Medical Equipment


What You Need to Know


Overview & Speakers:

This webinar will explain the frequency of diagnoses and importance of adherence to help your child and/or adult wear their medical equipment. Key takeaways include:

Common types of challenging behaviors that children and adults with Down syndrome may have when working to wear medical equipment

A step-by-step plan for increasing use of medical equipment

Motivators for avoiding wearing medical equipment and how to manage these behaviors

Lina Patel, PsyD

Lina Patel, PsyD joined the Sie Center for Down Syndrome at Children’s Hospital Colorado as Director of Psychology in November of 2012. She has extensive experience in treatment planning, parent support, diagnostic evaluation, and intervention. As she believes that behavioral challenges arise for many different reasons, she prides herself in coordination of care with community providers, educational supports, medical team members, and caregivers. Additionally, she conducts clinical research to better understand how neurodevelopment impacts behaviors.

Overview: Click to Listen


Powerpoint Presentation: Click to Download


Additional Handout: Click to Download


Questions & Answers:

Gail, a member of the Down Syndrome Association of Delaware:

1. How do you get your child with DS and Autism to wear glasses for more than 4 seconds?

This is a difficult question, as sensory issues are particularly challenging for children who are dually diagnosed. Is there a time of day that your child is particularly calm? Maybe when eating or in the bathtub? Without knowing specifically what your child’s level of understanding is, I would also consider using a visual timer (try the Countdown timer) to teach your child that the glasses will come of in 4 seconds to start, then maybe 7 seconds, and then increase from there. Since the visual timer looks the same, even when the time is increased, perhaps that may help your child learn how long before practice is done.

2. How do you get your child to not pull out their g-tube, pull out their hearing aids, and throw their glasses when they have severe sensory issues?

I believe that children with sensory issues get so overwhelmed and focused on the distress they are experiencing that they try to escape from the situation that is distressing. The best advice I can give is to start with desensitization to one of the pieces of equipment that you are referring to. It makes most sense that you start with the g-tube. You may need to do a combination of denying access to your child’s g-tube and at the same time keeping your child’s hands busy at all times. I’m not sure how old your child is, but some families have used a wrap over the g-tube site or placed their child in something like a onsie or a leotard to reduce access.

3. Can you give me tips on how to operate as a more normal family in a public setting while tending to all these medical needs?

I can imagine the distress that your family must experience with a very medically complex child. I feel like your question may require further discussion about what specifically feels the most distressing. Then, I would work on that part first. Is your child a picky eater? Is it difficult to go out to restaurants together? Is it more related to something else? Please reach out to discuss further.

Lexy, a parent from Verona, WI:

1. CPAP mask! He can take it off himself in the night. And he has nothing that is a high enough motivator. Help!

The first thing that I would think about is whether he is taking the mask off intentionally or without awareness. If it is intentionally, there are two options. First, some parents will sleep with their child at first to replace the mask each time it is taken off. This is obviously stressful for the family and you would then need to work on fading yourself out of his bedroom again once your child learns that taking the mask off is not an option. If you think that your child is taking it off without realizing it (meaning in his sleep), then I would work with your CPAP team to see if your child needs a different mask, if you can use a sweatshirt to fish the tubing through to reduce the chance that it moves around and then your child takes it off.

2. Any tips for helping him wear a watch?

If your child has sensory issues around wearing a watch, I would start with having your child wear the watch during an activity where he is most distracted. The distraction can help reduce the focus on the feeling, resulting in him getting used to it. You can also use a visual timer to help him know just how long he has to wear it before he gets to take it off. Gradually increasing the time on the visual timer will help him get used to the feeling to the point where he no longer feels the need to take it off or isn’t bothered by it. You can use duct tape to secure the band too so that he can’t take it off for the short time that you are having him practice wearing it.

Christina, a parent in Kearney, NE:

1. My son chews on his glasses and has broken 2 pairs. What do I do?

I would consider speaking to an OT that specializes in sensory issues. They may be able to suggest other ways for your child to get oral input so that glasses aren’t used to get that input. Chewelry can be a great tool to consider using. Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

2. My son also hides his glasses, we’ve lost 3 pairs. What should we do?

Kids can be so creative in how they “get rid of” glasses. I would review what are the highest risk times that he hides them (When in the car? When transitioning from one place to another? When playing alone in a room?). During those times, start out with full level supervision. Teach your child through routine that they can place their glasses in a case or give them to you if they need a break. That way, even if they “get rid of them” or don’t want to wear them for the time being, they can have control over asking for a break, rather than just getting rid of them.

Jenny, a self-advocate in Boise, ID:

1. If you fall asleep each night with your CPAP mask on, how can you increase the length of time you use it? The fit and pressure are adjusted so that’s not the problem. We’ve been using the mask nightly for 2 years but can’t get usage beyond a couple of hours.

I hate to suggest this, especially without knowing how old your child is, but many of our families will sleep in the room with their child so that they can replace the mask. The more practice your child has at night wearing it, the less likely they will take it off because they are used to the feel. I would suggest making sure that you are not laying in the bed, but maybe next to.

Sandra, a parent in Mission Viejo, CA:

1. My son has a BAHA that attaches magnetically behind his ear. He has so much anxiety when he wears it—but he can’t explain why. What insights do you have on if it’s a sensory feeling of the bone conduction or if it’s because he’s hearing more than he normally does.

Without being able to ask more questions about what behaviors your child exhibits when the BAHA is one, I would guess that it is probably because of the new sounds heard. To manage anxiety, be clear about how long your child has to wear the BAHA during the practice session. Then, when you see that your child looks startled or upset, label what sound your child may have heard. For example, you might say “Oh, it was loud when I closed the door, huh?” Remain calm as you label what you think your child heard.

Kristen, a parent in Laramie, WY:

1. How to get a cpap mask on a toddler without head thrashing

Have you tried modeling putting the CPAP on a doll or on yourself. Whether you put it on yourself or a doll, sing a song your child is familiar with. When the song is done, take off the mask. Then say “Your turn”. Your child knowing that practice is only for a certain amount of time can help reduce head thrashing.

2. Reward system ideas for young toddlers (almost 2)

Toddlers are at an age where they love social engagement. Social engagement like singing songs or playing with toys together is a great reward. Have your child put the equipment on during practice and then engage in play or singing.

3. Best ways to introduce glasses to toddlers

I typically introduce glasses to toddlers in setting where I would have more control and where it is less stressful, like mealtimes for some kids or during bathtime. They are distracted and you can simply remind them to put glasses back on in a more controlled manner. If your child does take them off during that time, without a big reaction, you would simply replace the glasses and then continue to play in the bathtub or continue to interact while feeding.

Anna, a parent in Arvada, CO:

1. How do we get our son to keep hearing aids on at school and other places that we can’t directly supervise him?

This would require a careful discussion with the school team about how hearing aid use impacts access to education on the IEP. In my experience, starting with use at school during a structured time when one on one attention can be given works best. Avoid starting in the louder settings like gym and the cafeteria.

2. What about when it is too loud in a restaurant/ cafeteria/ gym? He seems overwhelmed with his hearing aids on in places like that and we very often just take the hearing aids off preemptively. Is there a better way to handle extra loud situations?

I believe that louder settings require a slower desensitization process. Use a visual timer to help your child tolerate wearing the aids in these noisier settings for a short amount of time. That also allows you to end on a good note. Increase the amount of time they are worn in this setting over time as your child gets used to them. Some aids also have an app that allows parents to decrease the volume on aids in these louder settings. Teaching your child to advocate for themselves and to say it is too loud could then allow you to decrease the volume but keep the aids in.

3. He eats them!!! How do we get him to stop chewing on his ear molds when he takes them off!??

Look for something that has a similar texture that he can chew (chewelry for example). Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

Allyson, a parent in Albuquerque, NM:

1. Our insurance expects compliance with our daughter’s CPAP to be at 6hrs per night 80% of the month to continue their coverage. We were able to extend it month to month but was causing so much anxiety for us parents. Any tips or ideas dealing with insurance so we can continue a gradual desensitization to her CPAP?

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.

Danielle, a parent in Denver, CO:

1. We did a lot of CPAP practice/desensitization a year ago and our son accepts putting it on at bedtime. The issue is he repeatedly takes it off all night. The folks at the sleep clinic want us to continue to practice during the day but it’s hard to see how that will help with him keeping it on all night, and it’s just such a hassle to drag out every day. Is daytime practice really that effective in this situation?

It depends on why your child is taking it off. If your child is taking it off without knowing it (still asleep), daytime practice can be helpful, as it gets the child to become desensitized to the sensation or feel of the equipment, thus reducing the unconscious need to take it off at night. Some of our families will also gut it out for a few weeks and just sleep in the room with their child and replace the mask each time it is taken off.

2. Also, our son has ruined a couple of pairs of glasses by chewing on them. We’re only letting him wear the under complete supervision. As a result he wears it at school but hardly ever at home since it’s so easy to turn our back and then another pair of glasses is ruined. Any suggestions?

I would have your child play, relax, sit within line of sight when at home. Provide positive attention and praise for keeping his glasses safe. You may also need to give your child something different to chew on (chewelry) and continuously practice having your child chew on the chewelry instead of their glasses.

Laura, a parent in Midlothian, VA:

1. How would you adjust these steps for a child that has no concept of time (aka a 2 year old).

I would have practice occur during play time with your child. Put the equipment on and then begin playing. If your child reaches for their equipment or successfully takes it off, place your hand on the toy they are playing with or move the toy away and indicate that the equipment first must be put back on, and then you can continue to play.

2. Regarding CPAP if a child won’t accept pressure while awake is it a bad idea to put it on after they fall asleep, even if you are working to get them to accept during the day?

I am not a fan of putting it on when they fall asleep only because it can be even more distressing and alarming if your child wakes up in the middle of the night with it on their face. They will have a much more difficult time practicing when awake if they have this experience. That being said, I have many families who have done this and it is been fine.

Mary, a parent in Oakland, CA:

1. My son started off strong using his CPAP machine but after 10 or so nights he refuses to wear it. How do I start over?

Start over the same way you desensitized him the first time. That way, it is a familiar process. I would also think about what could have resulted in the refusal. It could be that he is testing whether you will stay first with the use of CPAP or it could be that he had a cold and that the CPAP was more distressing during that time. Either way, I would follow your previous procedure.

Tangi, a parent in Cranbaury, NJ::

1. How do you deal with insurance companies with cpap machines with the required amount of hours. they require at least 4 hrs which is long in the beginning.

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.


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Be Beautiful Be Yourself Models Press

December 4th, 2019 by Global Down Syndrome Foundation


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