The GLOBAL Down Syndrome Foundation (GLOBAL) is proud to endorse the Words Matter Act that is being reintroduced by U.S. Representatives Mark Pocan (WI-02), Pete Sessions (TX-17), Eleanor Holmes Norton (DC) and Cathy McMorris Rogers (WA-05). The bipartisan legislation will remove more than two dozen instances of “mentally retarded” from federal law, replacing the outdated language with terminology that is appropriate for people with Down syndrome and other intellectual and developmental disabilities. Removing these harmful words from the U.S. Code will modernize our laws and encourage more respectful conversations surrounding individuals with Down syndrome.

This important legislation builds upon the 2011 “Rosa’s Law” (P.L. 111-256) which struck “mental retardation” from federal law. GLOBAL was proud to be among the first to endorse that bill and is honored to be a lead supporter of the Words Matter Act.

We applaud and are grateful to Reps. Mark Pocan (WI-02), Pete Sessions (TX-17), Eleanor Holmes Norton (DC), and Cathy McMorris Rogers (WA-05). As GLOBAL Congressional champions they are supporting GLOBAL’s work to increase NIH funding that is resulting in elongated life and improved health outcomes for people with Down syndrome.

Other resources:

Words Can Hurt

John C. McGinley’s Essay on the R-Word

GLOBAL CALLS OUT NETFLIX for anti-disability, anti-Down syndrome rhetoric

GLOBAL’s Response to Kanye West Using the ‘R’ Word

New Research Capability Will Accelerate Breakthrough Immune System Dysregulation Research in People with Down Syndrome

DENVER – Thursday, April 27 – Today, the Global Down Syndrome Foundation (GLOBAL) announced its affiliate, the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus (Crnic Institute), has acquired a $950,000 state-of-the-art Immune Monitoring Station thanks to Community Project Funding that Congressman Jason Crow (CO 6^th District) secured as part of the Fiscal Year 2022 appropriations legislation.

The Immune Monitoring Station will significantly accelerate the pace of research discoveries at the Crnic Institute as well as treatments that lead to improved health outcomes for people with Down syndrome.

“This equipment will be used to better understand how the chronic inflammatory state in people with Down syndrome predisposes them to multiple co-occurring diseases,” said Dr. Joaquín Espinosa, executive director at the Crnic Institute. “Thanks to Rep. Crow’s work, and the government advocacy of Michelle Sie Whitten and the GLOBAL team, Down syndrome research at the Crnic Institute can be completed a lot faster.”

Specific co-occurring diseases to be analyzed with the Immune Monitoring Station include transient myeloproliferative disorder, lymphocytic and myeloid leukemias, autoimmune thyroid disease, autoimmune skin diseases, celiac disease, seizure disorders, developmental regression, autism spectrum disorder, pulmonary hypertension, dysphagia/aspiration and Alzheimer’s disease.

Dr. Huntington Potter, professor of neurology and director of Alzheimer’s disease research at the Crnic Institute with GLOBAL self-advocates

“We are deeply grateful for Congressman Crow’s commitment and support for GLOBAL’s work to advance research that is transforming the lives of the amazing people with Down syndrome we serve,” said GLOBAL President & CEO, Michelle Sie Whitten. “We are proud to have the Crnic Institute, the epicenter of national and international Down syndrome research and medical care, right here in Colorado.”

The Crnic Institute Community Project Funding request made by Rep. Crow was also championed through letters of support from the University of Colorado School of Medicine, Rocky Mountain Down Syndrome Association, Colorado Springs Down Syndrome Association, Make-A-Wish Foundation, Rise School, Easter Seals Colorado, Colorado Cross Disability Center and ArcThrift.

“The Crnic Institute and GLOBAL are advancing life-changing science that is elongating life and improving health outcomes for those with Down syndrome,” said Rep. Crow. “I’m thrilled we are able to help them make important investments in their research infrastructure that will boost their efforts to better understand diseases like Alzheimer’s and solid tumor cancers and find new and better treatments.”

The Crnic Institute is the largest center for Down syndrome research in the world, with more than 50 research teams and 200+ scientists involved. In 2016, with support from GLOBAL, Dr. Joaquín Espinosa and his scientific team made the groundbreaking discovery that people with Down syndrome experience chronic immune system dysregulation. Due to this discovery, the Crnic Institute was granted an unprecedented NIH-funded clinical trial using FDA drugs that normalize the immune system in people with Down syndrome

People with Down syndrome have three copies of chromosome 21 instead of two. Because of one extra chromosome, people with Down syndrome have a very different disease spectrum than others. People with Down syndrome are highly predisposed to certain diseases (such as Alzheimer’s and autoimmune disorders) and highly protected from others (such as solid tumors and certain types of heart attack or stroke).

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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 2,200 patients with Down syndrome from 33 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 & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . 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). 

GRAMMY-Nominated Multiplatinum Singer-Songwriter Gavin DeGraw to Perform & Award-Winning ABC & Fox News Anchors to Emcee

DENVER– Thursday, March 30 –   The Global Down Syndrome Foundation (GLOBAL) announced its annual AcceptAbility Gala (“Gala”) will take place on Wednesday, June 7, 2023 at the Hyatt Regency Hotel Washington on Capitol Hill in Washington D.C. beginning at 6:00 PM ET. GLOBAL will present its prestigious Quincy Jones Exceptional Advocacy Award to Congresswoman Katherine Clark (D-MA) and Congressman Pete Stauber (R-MN) for their unwavering support for GLOBAL and the people with Down syndrome we serve. Self-advocate Abby Ashbrook will be recognized as GLOBAL’s 2023 Ambassador.

The event will raise critical funds and awareness for GLOBAL’s life-changing research, medical care and government advocacy for people with Down syndrome. Proceeds will help underwrite over 2,400 patients with Down syndrome from 33 states and 10 countries, over 200 scientists working on co-occurring conditions such as Alzheimer’s and immune system disorders, and will help fulfill GLOBAL’s mission to elongate life and improve healthcare outcomes for children and adults with Down syndrome.

The AcceptAbility Gala will also feature dancing and a live performance by GRAMMY® Award-nominated multiplatinum singer-songwriter Gavin DeGraw, whose set will include some of his top hits throughout his expansive career.  Inclusive dance troupe RhythmXpress and Robert Wallop, a professional dancer with Down syndrome, are part of the night’s inspirational entertainment.

GRAMMY-Nominated Multiplatinum Singer-Songwriter & 2023 AcceptAbility Gala Performer Gavin DeGraw

Kyra Phillips, award-winning ABC journalist and a GLOBAL Quincy Jones Award recipient, and John Roberts, co-anchor of “America Reports” on Fox News, will emcee the event.

Key speakers will include Congresswoman Cathy McMorris Rodgers and GLOBAL President and CEO Michelle Sie Whitten. See the full list of this year’s Congressional Hosts and Gala Congressional Committee on the AcceptAbility Gala website.

The AcceptAbility Gala brings together congressional champions from both sides of the aisle, key directors and scientists from the National Institutes of Health (NIH), and the Down syndrome community for a night of celebration and inspiration. Support for this event allows GLOBAL to deliver on significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. With support from its champions, GLOBAL’s advocacy efforts on Capitol Hill have resulted in $200 million increase in NIH funding in five years, as well as outreach to over 14,000 families.

Down syndrome is the leading cause of developmental delay in the U.S., yet it is often overlooked by the federal government. The Global Down Syndrome Foundation is the lead advocacy non-profit working with self-advocates, congressional champions, and the NIH to advance Down syndrome research and medical care that will lead to the elongation and improved quality of countless lives.

For more information, please visit the AcceptAbility website.

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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 2,200 patients with Down syndrome from 33 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 & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . 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). 

Press Contacts: 

Ali Rubin, alirubin@gmail.com, C: (917) 242-6955

Anca Elena Call, acall@globaldownsyndrome.org, C: (720) 320-3832

For Immediate Release: 

Dominique McKay, dmckay@narrativedc.com, (202) 730-0133

Sheryl Tirol, stirol@regis.edu, (303) 458-4218

Anca Elena Call, acall@globaldownsyndrome.org, (720) 320-3832

REGIS UNIVERSITY EXPANDS ACCESS TO NEW POST-SECONDARY PROGRAM FOR STUDENTS WITH INTELLECTUAL DISABILITIES

Innovative Program Receives $365,000 in Scholarship Funding to Cover Tuition, Housing

Denver, Colo.— Today, Regis University (“Regis”) announced more than $365,000 in new scholarship funding for Denver County and prospective residential students from across the U.S. enrolling in the university’s groundbreaking GLOBAL Inclusive Program. This innovative program is one of only two post-secondary programs for students with intellectual disabilities offered at a Jesuit university and it is a collaboration effort between Global Down Syndrome Foundation (“GLOBAL”), Regis University and the Anna and John J. Sie Foundation.

A combination of this new scholarship funding and a grant provided by the Anna & John J. Sie Foundation will help ensure in-state and out-of-state students have access to the GLOBAL Inclusive Program. Scholarship funding will help cover costs related to tuition, books and supplies, extracurricular activities, transportation, and room and board. Since its launch, the GLOBAL Inclusive Program continues to receive the support of Regis University at the highest level.

“Establishing the GLOBAL Inclusive Program is perfectly aligned with our Jesuit values and we are excited to bring together the entire university community in support of our students who are differently-abled,” Regis University President Salvador D. Aceves, Ed.D. said. “We believe that our students with and without intellectual and developmental disabilities benefit from diverse learning styles and mutual understanding. Consistent with our Ignatian educational tradition, our faculty and staff are eager to educate the whole student and ensure we set them up for success.” 

“To be able to offer students a safe, welcoming college experience in Denver is a dream come true,” GLOBAL President & CEO Michelle Sie Whitten said. “When I see the independence my own daughter is showing in the program as compared to high school, I feel pride and excitement for her future. Our hope is that we can work with other Jesuit universities and colleges across the nation and create educational research leveraging a larger population base and outcomes.”

The GLOBAL Inclusive Program was initiated under Regis University Provost Karen Riley, Ph.D. Riley is an internationally recognized expert in neurodevelopmental disorders and focuses on improving the lives of children and families impacted by Down syndrome.

Jeanine Coleman, Ph.D., is an associate professor in the Division of Education at Regis University and serves as director of the GLOBAL Inclusive Program, utilizing her expertise in Early Childhood Special Education and research on children with neurodevelopmental and intellectual disabilities. Coleman has more than 30 years of experience working at the local and state levels conducting research and policy analyses for children with disabilities.

The GLOBAL Inclusive Program has three levels:

1. Basic Level: Includes 12-18 credit hours of academic coursework and extracurricular support for independent living and basic job skills over one year.
2. Intermediate Level: Includes the Basic Level offerings plus 12 additional credits of employment-specific courses over two years.
3. Advanced Level: Includes the Intermediate Level offerings plus supported residential living over two years.

The program culminates in a college certificate and includes modified curriculum for classes with typical peers, peer mentors and professors to assist with homework, class projects, internships, social activities, sports and exercise.

“My first year has been great,” said Grace Grubb, a 22-year-old currently enrolled in the GLOBAL Inclusive Program. “I like to study, and to hang out with my friends and my peer mentors. My favorite classes are philosophy, religion, and public speaking. I want to live in the dorm. I want to finish college and get a job!”

According to the Centers for Disease Control and Prevention, approximately 6.5 million people in the U.S. have an intellectual disability. An estimated 68% graduate from high school, but many of those graduates do not go on to seek a higher education. In 2022, 21% of people with a disability were employed, according to the Bureau of Labor and Statistics.

Initiatives like the GLOBAL Inclusive Program will help ensure those living with intellectual disabilities are prepared to thrive in adulthood. Learn more about the GLOBAL Inclusive Program, including how to apply for scholarship funding, here.

GLOBAL Inclusive Program Background:

• Enrolled students complete 12 to 30 credit hours using a combination of modifications and accommodations.
• Classes include a variety of subjects — including writing, philosophy, communications, psychology, and health and exercise.
• Students receive support from an Educational Support Specialist (ESS) during classes, tutoring sessions, and class preparation, as well as an Academic Success Coach.
• The ESS also provides support to faculty that enables the program to make real-time accommodations and modifications in and outside of the classroom.
• Peer mentors help with practical tasks such as navigating the campus and sharing their social knowledge.
• Two days a week the students participate in a physical fitness class using the Mann Method of Physical Therapy and Fitness.

ABOUT REGIS UNIVERSITY

Established in 1877, Regis University is a premier, globally engaged institution of higher learning in the Jesuit Catholic tradition that prepares leaders to live productive lives of faith, meaning and service. Regis University, one of 27 Jesuit universities in the nation, has three campus locations in the Denver metro area and extensive online program offerings with more than 6,000 enrolled students. For more information, visit www.regis.edu.

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Autism and Down Syndrome know no borders: mothers, families and professionals laying the foundation for protection and fulfillment

DENVER, CO – February 28, 2023 – The Global Down Syndrome Foundation (GLOBAL) President and CEO, Michelle Sie Whitten, has been invited to speak on a special guest panel at the United Nations 67^th Commission on the Status of Women that will take place in New York City on Friday, March 17, 2023 at 1:15 p.m. ET in United Nation Conference Room 2.   

Whitten will present on how research and medical care in the United States is elongating life and improving health outcomes for those with Down syndrome and Autism, and how this renaissance is positively changing perceptions worldwide.

Whitten will join other panelists:

• Gabriel Cobb, Triathlete and self-advocate with Down syndrome
• Helen Minkoulou, Parent & President of the Association for the Supervision of Child Victims of Rare Disease of Cameroon
• Everett & Emily McKiernen, Self-advocate with autism and his mother
• Chloe & Kurt Kondrich, Self-advocate with Down syndrome and her father
• Zaboya Dama Adele Judith Epse Makomra, Promoter in the implementation of a day-care and socio-professional training center for people with autism and Down syndrome in Yaoundé, Cameroon
• Yves Akamba, Vice President of the Center for Applied Research on Sustainable Development

The Sponsoring Member State is the Permanent Mission of Cameroon to the United Nations and the Sponsoring Organization is the Center for Family and Human Rights.

The symposium brings together experts, self-advocates and family members from the Down syndrome and autism communities to discuss the challenges women and families face raising children with development disabilities. It will address concrete cultural, legal and policy changes that can help families welcome and care for children with Down syndrome and/or Autism, including their transition from youth into adulthood.

In December 2011, the General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). The General Assembly decided, with effect from 2012, to observe World Down Syndrome Day on 21 March each year.

To attend this event please RSVP by Friday, March 10, 2023 at March17UNRSVP@gmail.com. For more information and RSVP details, please visit the sponsoring organization website.

A popular video created by GLOBAL in honor of World Down Syndrome Day will be presented at the conference—watch here.

In addition to providing an important keynote presentation at the United Nations in New York City, GLOBAL will also celebrate World Down Syndrome Day with an in-person and virtual dance party on Friday, March 24. For in-person guests, GLOBAL’s World Down Syndrome Dance Party will start at 6:30 p.m. MT and feature TV and radio personality Kathie J, DJ Lo, complimentary food, drinks, a dance-off and more! Sign up here.

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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 2,200 patients with Down syndrome from 33 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 & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . 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). 

Experts from Children’s Hospital Colorado and CU Anschutz Medical Campus are Key Collaborators

DENVER– February 27, 2023 – Global Down Syndrome Foundation (GLOBAL) announced today that it has received a transformative grant from The Salah Foundation. The grant will fund three ambitious areas: (1) the purchase and application of important diagnostic and treatment equipment that will stop the progression of keratoconus in patients with Down syndrome, (2) a first-in-kind series of workshops for professionals and families that raise awareness and understanding related to eye and vision issues in children and adults with Down syndrome, and (3) a white paper that will inform the first medical care guidelines for eye issues and vision loss in adults with Down syndrome.  

Keratoconus is an underdiagnosed, progressive eye disease where the front layer of the eye (the cornea) thins and weakens over time causing a cone-like bulge. The condition, if left untreated, can lead to serious vision problems including blindness. While keratoconus is not reversible, earlier detection can result in proactive treatment to halt the progression of the condition and can ultimately save the patient’s vision.

It is estimated that less than 2% of the general population suffers from keratoconus versus up to 30% in the Down syndrome population.

This generous Salah grant will underwrite a Pentacam Comprehensive Eye Scanner and Cross-Linking System. The Pentacam is an important piece of equipment that provides more precise measurements of the central cornea as compared to any other ocular measurement instrument. This improves the ability of the eye clinician to diagnose ocular conditions, especially keratoconus. The Cross-Linking System is the equipment used to perform corneal cross-linking, a procedure using riboflavin and UV light to strengthen the cornea. Cross-linking is the only treatment proven to halt the progression of keratoconus and is a fairly new procedure in the U.S. that received FDA approval in 2016.

Dr. Emily McCourt, MD, Chief of Pediatric Ophthalmology at Children’s Hospital Colorado and Dr. Michael Puente, MD, pediatric ophthalmologist at the University of Colorado School of Medicine and Children’s Hospital Colorado, have treated over 500 patients with Down syndrome over the last several years, as referrals from the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

“I can tell you from first-hand experience the Pentacam and the cross-linking procedure can and will save the vision for individuals with Down syndrome,” says Dr. McCourt. “Dr. Puente and I are excited to work with GLOBAL and fulfill our ambitious goals associated with this grant.”

Dr. McCourt and Dr. Puente will be organizing the workshops and writing the white paper that will inform future guidelines on vision and eye care for adults with Down syndrome. Dr. Puente is the Director of Medical Student Education in Ophthalmology at University of Colorado School of Medicine and his interests and expertise also include eye care for adults with intellectual disabilities.

“Our meetings on this project with GLOBAL have been so exciting. I believe the results will have an extraordinary impact on the lives of hundreds of individuals with Down syndrome suffering from keratoc

onus and other eye issues. I cannot stress enough how meaningful that is to the patients and their families,” adds Dr. Puente.

“Having our 18-year-old daughter get the cross-linking procedure was life-changing,” says Jennifer Revesz. “Lauren is a wonderful daughter and sibling who happens to have a dual diagnosis of Down syndrome and Autism. To add blindness to her challenges is really unthinkable. We are so grateful to Dr. McCourt for helping us to get cross-linked and preserving Lauren’s vision.”

“Generous support from The Salah Foundation has allowed us to provide life-changing resources to the amazing people with Down syndrome we serve,” says Michelle Sie Whitten, President & CEO of GLOBAL.  “Noreen, Fred, Megan and the whole Salah family have long believed in our work, and they truly care about our children and adults with Down syndrome. With their help we are delivering on our mission to elongate life and improve outcomes – we are so grateful!” 

“We applaud the Global Down Syndrome Foundation’s work in addressing the often overlooked population of adults with Down syndrome,” says Noreen Salah Burpee, Executive Director of The Salah Foundation. “The Salah Foundation is rigorous in its grant making and we anticipate the results of this grant to inform improved, evidence-based eye care and outcomes for this community .”

The Salah Foundation has been a long-time supporter of GLOBAL, having previously provided a lead gift of $1 million for its state-of-the-art education center, as well as additional generous grants associated with life-skills and independence for adults with Down syndrome.  

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About the 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 2,200 patients with Down syndrome from 33 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 & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World TM . 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). 

About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

Leads Committee Efforts to End Discrimination Against Individuals with Disabilities

Washington, D.C. – Eastern Washington Congresswoman Cathy McMorris Rodgers (WA-05) today announced the launch of the bipartisan, bicameral Congressional Task Force on Down Syndrome. She is joined in leading this group by Congresswoman Eleanor Holmes Norton (D-DC) and Senators Jerry Moran (R-KS) and Bob Casey (D-PA).

“My oldest son Cole was born with Down syndrome, and he is one of the greatest blessings in my life. Getting to see the world through Cole’s eyes has made me a better mom and a better legislator,” said Rodgers. “I’m reminded every day that the Down syndrome community is full of potential just waiting to be unleashed, which is why this task force is so important. Together, we can educate those around us and show the world that nobody is bound by the conditions of their birth.”

The Congressional Task Force on Down Syndrome will serve as an informal group of members dedicated to educating their colleagues and their staff about Down syndrome, while working towards the common goal of promoting legislative activities and public policies that will enhance the quality of life for those with Down syndrome.

“I am excited to once again be co-chairing the Congressional Task Force on Down Syndrome for the 118th Congress,” said Norton. “Thanks to the hard work of the task force in 2014, President Obama signed the ABLE Act in the 114th Congress, which created tax-free savings accounts for individuals with disabilities. Down syndrome is a personal issue for me, and I am proud to be fighting for Americans with Down syndrome and their families as we begin a new legislative session.”

“Through increased federal resources and great partners in the medical research field, Down syndrome research has improved significantly in recent years,” said Moran. “I am grateful to continue co-chairing the Down Syndrome Task Force to accelerate research on Down syndrome, including its connection to Alzheimer’s disease, and to promote policies that support individuals with Down syndrome and their families.”

“I’m proud to be a co-chair of the bipartisan Down Syndrome caucus and bring attention to the experiences and potential of people with disabilities,” said Casey. “From expanding ABLE Accounts so people with disabilities can save for the future to phasing out the practice of employers paying subminimum wage, we have made progress in our mission to knock down the barriers that people with Down syndrome face. As we convene this Caucus, I know we are all committed to improving the lives of people with Down syndrome by working hand in hand with the Down syndrome community.”

The task force is supported by three leading national Down syndrome advocacy organizations: The Global Down Syndrome Foundation (GLOBAL), National Down Syndrome Congress (NDSC), and National Down Syndrome Society (NDSS). Representatives from these organizations applauded today’s announcement, issuing the following joint statement:

“As three leading national Down syndrome organizations, the Global Down Syndrome Foundation, the National Down Syndrome Congress, and the National Down Syndrome Society, we stand in strong support of this task force and applaud Congresswomen Cathy McMorris Rodgers and Eleanor Holmes Norton and Senators Robert Casey and Jerry Moran on their leadership.  The reintroduction of a bipartisan, bicameral Congressional Task Force on Down Syndrome signifies the 118th Congress’s commitment to increasing education and awareness of Down syndrome and advancing legislation that positively impacts the Down syndrome community,” said Michelle Sie Whitten (GLOBAL), Jordan Kough (NDSC), and Kandi Pickard (NDSS)

Today’s announcement comes immediately after an Energy and Commerce Health Subcommittee hearing on Cathy’s legislation, the Protecting Health Care for All Patients Act (H.R. 485), which would expand access to lifesaving cures and prevent discrimination against Americans with disabilities.

Top Left: Rep. Cathy McMorris Rodgers (WA-05); Top Right: Rep. Eleanor Holmes Norton (D-DC), Bottom Left: Senator Jerry Moran (R-KS); Bottom Right: Rep. Bob Casey (D-PA)

Below are excerpts from her remarks as prepared for delivery:

“Finally, we will discuss why it is important to take action to protect people with disabilities with the Protecting Health Care for All Patients Act.

“It would ban Quality Adjusted Life Years – or QALYs – that discriminate against people with disabilities and patients with debilitating or life-threatening health conditions. 

“QALYs undervalue treatments for patients who have shorter life spans than others.

“In countries with QALYs, the most vulnerable get pushed to the back of the line for treatment. People like those with cystic fibrosis, ALS, or people like my son with Down syndrome.

“The government says their lives don’t matter as much. They’re not valuable enough.

“In America—where we have led the world in amazing medical breakthroughs and innovation—we must ban QALYs and strongly affirm that every life is worth living.

“It is my sincere hope we can move forward on this bill in a bipartisan way.

“Families need hope. There is inherent dignity in every human life. 

“That is why we are coming together today in our first legislative hearing this Congress … as we work together to promote life, liberty, and the pursuit of happiness for all.

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Global Down Syndrome Foundation, Centro UC Síndrome de Down and Japan Down Syndrome Association Join Forces to Translate & Provide Online Access to the GLOBAL Adult Guideline

Denver –December 29, 2022 – Today, Global Down Syndrome Foundation (GLOBAL), published a Spanish and Japanese version of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (“GLOBAL Adult Guideline”) in collaboration with the El Centro de la Universidad Católica de Síndrome de Down in Chile (Centro UC Síndrome de Down or CUSD) and the Japan Down Syndrome Association (JDSA).

The GLOBAL Adult Guideline is the first evidence-based guideline for adults with Down syndrome and was published in English in JAMA, the Journal of American Medical Association, in 2020. The guideline authors include the directors of the largest adult Down syndrome clinics in the US, and the current nine medical topics are: behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. GLOBAL is working to expand the topics to include sleep apnea, solid tumors, leukemia, vision/eye care, and physical therapy and fitness.

In addition to the 80-page guideline for medical professionals, GLOBAL has also published a much shorter family-friendly version, and toolkits that include easy to follow assessments for Celiac disease, Diabetes, Behavior, and annual check-ups.

All of these resources for adults are now available in Spanish and Japanese at no cost on the GLOBAL website, DS-Connect®: The Down Syndrome Registry, CUSD website, and JDSA website. The translations were possible in part due to a generous donation by GLOBAL Board Member and Colorado Rockies Owner, Charlie Monfort. 

“GLOBAL is pleased to be able to reach Spanish and Japanese speakers who have Down syndrome and their families in the U.S. in collaboration from the National Institutes of Health/DS-Connect®,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “The NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development has been supportive from the beginning. We are also deeply grateful for Dr. Macarena Lizama at CUSD and Dr. Hiroshi Tamai, President of JDSA, Dr. Chisen Takeuchi of the JDSA for helping to ensure this reaches hundreds of thousands of Spanish and Japanese speakers around the world.”

GLOBAL has worked with Congress since 2006 advocating for a trans-NIH Down syndrome research funding program and for increased funding. In December of 2010, GLOBAL and the NIH co-organized the first Down syndrome research conference with a focus on registries and biobanks. One important result was the establishment of DS-Connect®: The Down Syndrome Registry.

“It is so important for me and other people with Down syndrome to have this in Spanish,” says Yadira M. Carrillo, a 27-year-old self-advocate and entrepreneur who happens to have Down syndrome. “I need to know how to take care of myself as an adult!”

“Seeing the guideline in Spanish feels like GLOBAL values Spanish -speaking families like mine,” said Yadira Carrillo, mother of a 27-year-old daughter who has Down syndrome. “Language is a barrier some families face to receiving medical care and I know this will help so many people in the U.S. and internationally.”

In Chile, GLOBAL has been working closely with Dr. Lizama on many projects including creating the Spanish version of the GLOBAL Guideline and the COVID-19 and Down Syndrome Resource.

“What Michelle, Bryn Gelaro and their team have accomplished in research and medical care is so important,” says Dr. Macarena Lizama, Medical Director of the El Centro de la Universidad Católica de Síndrome de Down in Chile. “We are honored to collaborate with GLOBAL on this transformative resource and to improve medical equity, especially for Spanish-speaking countries where medical care access and basic resources for people with Down syndrome can be very scarce. I will be very proud to use this resource in my clinic and share it with my colleagues and families.”

Dr. Hiroshi Tamai echoes this sentiment, “We are grateful for the collaboration we have had with GLOBAL and to have this important resource in Japanese is a dream come true. My daughter and thousands of Japanese adults with Down syndrome will surely benefit. We look forward to working with GLOBAL and adding new medical areas in the next few years.”

GLOBAL is currently working with the Ministries of Health in both Chile and Japan to ensure the guidelines are available free of charge and easily findable on their disability home pages.

 To learn more about the GLOBAL Adult Guideline and download your copy today, visit www.globaldownsyndrome.org/medical-care-guidelines-for-adults/ 

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

# # #  

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 2,200 patients with Down syndrome from 33 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 & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . 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). 

IMPORTANT NOTICE 

While content of this press release and the GLOBAL Guideline was developed by GLOBAL and the GLOBAL Guideline Authors, we are unable and do not intend to provide medical advice or legal advice to individuals. Please contact your health care provider(s) or legal advisor(s) for questions specific to your individual health history or care.  

Press Contacts            

Anca Call                                                          
acall@globaldownsyndrome.org         

720-320-3832 

グローバルダウン症財団（米国）・日本ダウン症学会（JDSA）・

UC ダウン症センター（CUSD、チリ） 成人医療ガイドラインの共同翻訳・配布

デンバー – 2022 年 12 月 22 日 – 本日、グローバルダウン症財団は、グローバルダウン症成人医療ガイドライン（以下ガイドライン）の日本語版とスペイン語版を公開しました。

このガイドラインは、ダウン症のある成人について、エビデンスに基づく初のガイドラインで、2020 年に米国医師会雑誌 JAMA に掲載されました。ガイドラインの執筆者には、米国の主要な成人ダウン症クリニックの院長らが名を連ねており、現時点での医療的項目には、行動障害、認知症、糖尿病、循環器系疾患、肥満症、環軸椎不安症、骨粗鬆症、甲状腺疾患、セリアック病の９つがあげられています。今後、睡眠時無呼吸症候群、固形がん、白血病、視力障害・眼科疾患、理学療法・運動療法などに関する項目の拡充を行う予定です。

医療従事者向けの 80 ページのガイドラインに加え、より短いご家族向けバージョンも公開します。また、セリアック病、糖尿病、行動障害、定期健康診断のための簡単なアセスメント

（チェックリスト）を含むツールキットも公開します。

これらの成人ダウン向けのリソースはすべて、GLOBAL 公式サイト、DS-Connect®（ダウン症レジストリ）、CUSD ウェブサイト、および JDSA ウェブサイトにて、無料でダウンロードできます。

「米国国立衛生研究所/DS-Connect®の協力のもと、米国のダウン症患者およびそのご家族にスペイン語と日本語で情報を提供できることを嬉しく思います」と、グローバルダウン症財団理事長兼 CEO のミシェル・ジー・ウィッテンは述べています。「NIH（アメリカ国立衛生研究所）のユーニスケネディシュライバー国立小児保健人間開発研究所には、当初からご協力いただきました。また、CUSD のマカレナ・リザマ医師、JDSA 理事長の玉井浩医師、JDSA の竹内千仙医師には、世界中の何十万人ものスペイン語と日本語を話す人々にこのガイドラインを届けるためのご支援をいただき、深く感謝いたします。」

グローバルダウン症財団は、2006 年から NIH 横断的なダウン症研究助成プログラムの設立と助成金の増額を議会に働きかけてきました。2010 年 12 月には、NIH  と共同で、レジストリとバイオバンクに焦点をあてた初のダウン症についての研究大会を開催しました。その重要な成果のひとつが、ダウン症レジストリである DS-Connect®の立ち上げです。

「私を含め、他のダウン症のある人たちにとって、このガイドラインがスペイン語になることはとても重要です。」と、ダウン症をもって生まれた 27 歳のセルフアドボケート・起業家のヤディラ・カリージョは言います。「私は大人として、自分自身のケアをする方法を知る必要があるのです！」

ダウン症のある 27 歳の娘を持つ母親、ヤディラ・カリージョさんは、「スペイン語で書かれたガイドラインを見ると、グローバルダウン症財団が私のようなスペイン語を話す家族を大切にしているように感じられます」と述べています。「医療を受ける際に言語が障壁となる家族もいますから、このガイドラインは米国内外の多くの人々の助けになると思います。」

チリでは、グローバルダウン症財団はガイドラインのスペイン語版やCOVID-19 とダウン症と

 の関連についての資料作成など、多くのプロジェクトでリザマ医師と緊密に連携しています。

「ミシェルおよびブリン・ジェラロさんたちチームが研究と医療において成し遂げたことは、とても重要なことです」と、チリのカトリック大学ダウン症センター（ El Centro de la Universidad Católica de Síndrome de Down）の医療ディレクター、マカレナ・リザマ医師は語ります。「特にスペイン語圏では、ダウン症患者のための医療アクセスや基本的な資源が 非常に乏しいため、この革新的なリソースでグローバルと協力し、医療の公平性を改善できる ことを光栄に思っています。私はこのリソースを自分のクリニックで使用し、私の同僚やご家 族と共有できることを大変誇りに思います。」

玉井浩医師（大阪医科薬科大学）も同様に述べています。「グローバルとの協働に感謝しています。この重要なリソースが日本語で提供されることは夢のようです。私の娘や何千人ものダウン症のある方が恩恵を受けることでしょう。今後もグローバルと協力し、今後数年で新しい医療分野を追加していくことを楽しみにしています。」

現在、日本・チリ両国の厚生省と協力し、ガイドラインが無料で提供され、障害のある方向けのホームページで簡単に閲覧できるよう取り組んでいます。

グローバルダウン症成人医療ガイドラインの詳細とダウンロードは、以下のサイトをご覧ください。www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

グローバルダウン症財団公式サイト www.globaldownsyndrome.org

【グローバルダウン症財団について】

グローバルダウン症財団（グローバル）は、ダウン症のある人々の命を救い、健康状態を劇的に改善するために活動している米国最大の非営利団体です。3,200 万ドル以上を寄付し、初のダウン症研究機関を設立、米国 33 州お よび 10 カ国から集まった 400 人以上の研究者と 2,200 人以上のダウン症患者を支援しています。また、米国議会や国立衛生研究所（NIH）と密接に連携し、ダウン症の研究とケアに関する米国における主要なアドボカシー機関となっています。また、グローバルには 100 以上のダウン症関連団体がメンバー登録しており、さらに、アンシュッツ・メディカル・キャンパス内にある「ダウン症クルニック研究所」「ダウン症ジーセンター」「コロラド大学アル

 ツハイマー・認知センター」といった関連団体のネットワークの一翼を担っています。

グローバルは「ダウン症成人医療ガイドライン」「出生前・新生児ダウン症情報」および受賞歴のある広報誌「ダウン症ワールド」などの医療出版物を発行しています。また、世界最大のダウン症のための募金活動である「Be Beautiful Be Yourself Fashion Show」を主催しています。Globaldownsyndrome.org をご覧ください。また、ソーシャルメディア（Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome）もフォローしてください。

【重要事項】

本プレスリリースおよびガイドラインの内容は、グローバルダウン症財団およびガイドライン執筆者によって作成されたものですが、個人に対して医学的なアドバイスや法的なアドバイスを行うことはできませんし、行うことを意図していません。個々の健康管理やケアに特化した問い合わせについては、医療機関や法律アドバイザーにお問い合わせください。

＜問い合わせ先＞

Anca Call    acall@globaldownsyndrome.org     米国 720-320-3832