Archive for 2023

GLOBAL Advocacy in DC, Employment Awards, Support from Congressman Crow, Devil’s Advocate Interview, and more – Your April Newsletter!

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). 

GLOBAL Inclusive College Program at Regis University, 2023 AcceptAbility Gala, New Down Syndrome Task Force, and more – Your March Newsletter!

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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