Archive for 2023

This Year’s Be Beautiful Be Yourself Fashion Show is Dedicated to the Memory of GLOBAL’s Beloved Co-Founder Anna Sie

DENVER –October 26, 2023 – Global Down Syndrome Foundation (GLOBAL) is honored to announce a spectacular and star-studded line-up for its annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. In its 15^th year, the award-winning event is Co-Chaired by powerhouse philanthropists Luisa Law and Amanda Precourt, and will be held on Saturday, November 18 at the Sheraton Denver Downtown Hotel. Proceeds will benefit GLOBAL’s life-saving and transformative research and medical care.

Celebrity headliners include Rob Lowe, acclaimed author and film, theater and TV actor; Laura Linney, Academy Award-nominated and award-winning television and film actress;  John C. McGinley, award-winning film and TV actor; Caterina Scorsone, beloved actress from the longest primetime TV drama on ABC, Grey’s Anatomy, and her costar Kevin McKidd, Scottish-American film, television and theatre actor; Danielle Savre, American actress and singer; Terrell Davis, NFL Hall of Famer; Beverly Johnson, model, actress and entrepreneur; and Amanda Booth, model and actress.

Award-winning local NBC anchors Kim Christiansen and Mark Koebrich will emcee the event.

The 2023 Fashion Show is dedicated to the memory of beloved GLOBAL Co-Founder, Anna  , who sadly passed away on September 20^th after a long and valiant battle with cancer. Anna, a devoted wife, mother, grandmother, sister, aunt, loyal friend, and mentor is remembered as a generous philanthropist who co-founded GLOBAL, the Crnic Institute, the Sie Center for Down Syndrome, the Alzheimer’s & Cognition Center, the GLOBAL Inclusive Program and so much more. Anna made it her life’s mission to ensure her granddaughter, Sophia, and all people with Down syndrome have a brighter future.

2023 GLOBAL Ambassador Grace Brennan, Quincy Jones Exceptional Advocacy Award Recipients Madison Tevlin & Bobby Farrelly

The event will also honor GLOBAL Ambassador Grace Brennan, a vivacious and active 9-year-old who lives in California with her parents, sisters, and dog. Grace loves swimming, silly-laughing with her two sisters, Audrey and Ava, jumping on the trampoline, and dancing to her favorite songs, including “Peanut Butter Jelly Time.”

Acclaimed film director, screenwriter, and producer Bobby Farrelly and model, actor, and self-advocate Madison Tevlin will receive GLOBAL’s highest honor – the Quincy Jones Exceptional Advocacy Award. Past recipients include Jamie Foxx, Colin Farrell, Eva Longoria, Caterina Scorsone, John C. McGinley, Eric Dane, Kyra Phillips, and Beverly Johnson.

Bobby Farrelly and his brother, Peter, are internationally recognized for their iconic comedies, including Dumb & Dumber, There’s Something About Mary, Kingpin, Hall Pass, and many others. Their films have grossed well over $1 billion at the box office. As a solo artist, Bobby has also produced the award-winning documentary The Lost Son of Havana, and has directed many hit TV shows, including Loudermilk, The Now, and Trailer Park Boys. In March 2023, Bobby released the hit movie Champions, starring Woody Harrelson, Kaitlin Olson, and fellow Quincy Jones Exceptional Advocacy Award recipient Madison Tevlin. Champions is a heartfelt comedy that centers around a basketball coach who helms a team of players with intellectual disabilities.

Madison Tevlin began her career at the age of 12 when her cover of John Legend’s All of Me went viral. Born and raised in Toronto, Ontario, Madison is a model, advocate, and actor. Her credits include Mr. D, Who Do You Think I Am, hosting the red carpet at the Canadian Screen Awards, and her iconic role as Cosentino in the film Champions. Madison is the first person with Down syndrome to be nominated for a Canadian Screen Award – Best Host, Talk Show or Entertainment News. Previously, she walked the runway as part of the Knix Confidence Tour and was the keynote speaker at the Dear Mom conference in Laguna Beach, 2023. She guest co-hosted the national morning show Breakfast Television, and has written for Net-a-Porter and Maclean’s.

The evening will feature exclusive silent and live auction items, a sumptuous reception and sit-down dinner, and the inspiring fashion show featuring celebrities and 21 beautiful and brilliant models with Down syndrome.

The Be Beautiful Be Yourself Fashion Show is the largest Down syndrome fundraiser in the world with over 1,400 attendees. Proceeds go to GLOBAL’s life-saving research and medical care through its affiliates – Linda Crnic Institute for Down Syndrome, Colorado University Alzheimer’s and Cognition Center, and Anna and John J. Sie Center for Down Syndrome, all on the Anschutz Medical Campus.

Various levels of Be Beautiful Be Yourself Fashion Show tickets, table sponsorships (including VIP levels), and model sponsorships are available at www.bebeautifulbeyourself.org.

For celebrity interviews, additional information, imagery, or to cover the Be Beautiful Be Yourself Fashion Show, please contact trishdavis0707@gmail.com, For more information on the Global Down Syndrome Foundation, please 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 2,400 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). 

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Remembering Our Co-Founder Anna Sie, Celebs Support GLOBAL, & Groundbreaking Research – Your Sep & Oct Newsletter!

The foundation said in a statement to The Messenger that it hopes Jared Fields “will reflect upon his words” and “educate himself”

The Global Down Syndrome Foundation is speaking out about Big Brother contestant Jared Fields calling a housemate the R-word. Fields, who apologized for his use of the word, remains on the show.

“At the Global Down Syndrome Foundation, we are grateful for the freedoms we have in the US – including freedom of speech,” the organization’s President & CEO Michelle Sie Whitten tells The Messenger in an exclusive statement.

She adds, “We ALSO believe there are words that we are free to use, but as a society choose not to use, because they are so directly tied to violence against a vulnerable population.”

“We would argue the “R-Word” is such a word – witness Willowbrook, N.Y. to Pueblo, Colo. today,” continued Whitten. “Arguably, the best essay on this subject is written by GLOBAL board member and renowned actor, John C. McGinley, whose son, Max, has Down syndrome.”

She concludes, “Because of how the R-word and other derogatory and demeaning words hurt people with Down syndrome, and others who are differently-abled, we must use these moments to advocate and educate. To this end, we sincerely hope that Jared Fields will reflect upon his words, educate himself regarding the many abilities that people with Down syndrome have. Better yet, we hope he has the chance to meet awesome people with Down syndrome.”

Amid calls for Fields to be removed, he returned on Sunday night’s episode of the CBS reality competition series.

Friday, on the show’s live feeds, Fields was overheard using the “R-word” when describing another contestant’s strategy and later said, “I don’t think she’s the R-word. I slipped up. Obviously, I was angry about it [and] I’m willing to admit that.”

Medical Experts Q&A, GRAMMY-Nominated Multiplatinum Sing-Songwriter, Updated Down Syndrome Specialty Clinics, And More – Your August Newsletter!

In a new study, scientists at the University of Colorado Anschutz Medical Campus report the largest and deepest characterization of immune dysregulation in Down syndrome to date

AURORA, CO (July 23, 2023) – People with Down syndrome, the condition caused by an extra copy of chromosome 21, or trisomy 21, display chronic dysregulation of their immune system, which can contribute to high rates of autoimmune conditions and severe complications from respiratory infections.

In a new study published in Science Advances, scientists at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus report the largest and deepest characterization of immune dysregulation in Down syndrome to date. The findings also reveal important connections between immune hyperactivity and other aspects of Down syndrome and provide proof-of-principle evidence for a therapeutic strategy to restore immune balance in this population.

The Crnic Institute’s previous research demonstrated that this immune dysregulation is associated with hyperactivity in the interferon response, the main defense against viruses. In addition, they showed interferon hyperactivity contributes to many hallmarks of Down syndrome in a mouse model, including congenital heart defects, developmental delays, cognitive impairments and malformation of the bone structures in the skull.

The most recent study reports the analysis of hundreds of blood samples from research participants enrolled in the Crnic Institute Human Trisome Project, a large cohort study of people with Down syndrome. Using a combination of large-scale data technologies, referred to as multi-omics, they defined associations between the degree of interferon hyperactivity and multiple physiological, metabolic, and immune processes dysregulated by the extra chromosome.

“We observed that interferon hyperactivity really shapes the biology of Down syndrome across the lifespan. Those with the highest interferon activity display increased signs of autoinflammation, stronger dysregulation of important growth factors, profound metabolic changes, and a vastly different immune system,” says Dr. Matthew Galbraith, leader of the Data Sciences Program at the Crnic Institute and one of the co-leading authors of the paper.

“These results clearly demonstrate that persons with Down syndrome with the highest levels of interferon activity show drastic changes in the immune system, such as increases in a type of T cells often involved in the development of autoimmune conditions, or depletion of B cells, which are important for response to vaccines” explains Keith Smith, co-leading author of the paper.

Previous studies have indicated that interferon hyperactivity could be ameliorated with a class of drugs known as “JAK inhibitors” which are approved for the treatment of a wide range of autoinflammatory conditions in the general population. However, the effects of JAK inhibitors on the biological processes modulated by trisomy 21 have not been extensively studied.

To advance this area of research, the Crnic Institute team monitored the effects of JAK inhibition on a research participant with Down syndrome taking the JAK inhibitor known as tofacitinib, or Xeljanz™, for the treatment of alopecia areata. Alopecia areata is an autoimmune form of hair loss more common in people with Down syndrome. Over the course of several years and under the care of their dermatologist, the participant provided blood samples while on the medicine and during voluntary interruptions of the treatment.

“We observed a remarkable normalization of interferon hyperactivity when the participant was taking the JAK inhibitor. Consistently, her interferon metrics and other biomarkers of inflammation dropped from the abnormally high levels seen in Down syndrome down to the range observed in the general population, but not any lower. This indicates that the JAK inhibitor provided therapeutic benefit in terms of hair regrowth without suppressing the immune system below the normal range,” explains Dr. Angela Rachubinski, leader of the Clinical and Translational Sciences Program at the Crnic Institute and co-lead author of the study.

According to Dr. Joaquin Espinosa, executive director of the Crnic Institute and senior author of the paper, this study provided the rationale for two additional clinical trials for JAK inhibition in Down syndrome led by the Crnic Institute. “One study is focused on autoimmune skin conditions and another one is focused on Down Syndrome Regression Disorder, a rare but devastating condition characterized by sudden loss of  daily living skills and cognitive abilities.”

“This study is an example of the transformative scientific research taking place today that is enabled by increased funding from the National Institutes of Health through the INCLUDE Project, which in turn is the fruit of many years of advocacy and strong support from members of Congress. Naturally, none of these discoveries would be possible without the enthusiastic participation of our self-advocates and their families in research projects like the Human Trisome Project,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, which supported the project with funding and outreach.

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About the University of Colorado Anschutz Medical Campus

The University of Colorado Anschutz Medical Campus is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – that treat more than two million adult and pediatric patients each year. Innovative, interconnected and highly collaborative, the University of Colorado Anschutz Medical Campus delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by over $690 million in research grants. For more information, visit www.cuanschutz.edu.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

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 120 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 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).

This year, the Global Down Syndrome Foundation Awards Program hit $1.1 million in supporting people with Down syndrome and their families.

DENVER (August 31, 2023) – This year, the Global Down Syndrome Foundation (GLOBAL) Awards Program hit the $1.1 million mark providing over 300 awards to local Down syndrome member organizations in 46 states and 6 countries since the program started in 2011.

The 2023 GLOBAL Education Awards will go to 13 organizations in Arizona, Colorado, Florida, Maryland, Michigan, Minnesota, Nebraska, Nevada, New Jersey, Texas, Virginia and Wisconsin. A total of $76,000 will be invested in research and/or medical outreach programs that can quantitatively improve health outcomes. The awards will support over 8,000 individuals with Down syndrome, family members, and professionals. Over the years, a total of 20,000 individuals have been supported by the GLOBAL Awards Program.

Mann Method PT is a 1-hour biweekly fitness program that focuses on increasing strength, balance, and cardiovascular health in participants using a variety of evidence-based exercises. The program follows the Mann Method PT and is taught by individuals trained by Sarah Mann PT, DPT, MBA, NSCA-CPT. Participants complete an intake assessment when beginning the program and are re-evaluated after 8 weeks to measure their overall progress. Participants also have the option to join in a weekly social dinner outing each Friday, and discuss healthy, post-workout food choices. Participation is free.

A Star-Studded Fashion Show, Successful NDSC Roundtable, GLOBAL Advancement Award Winners, and more – Your July Newsletter!