NDSC 2018 – A Milestone Convention for Global
July 27th, 2018 by Global Down Syndrome Foundation
Engaging Roundtable Discussion
During Global’s Roundtable, speakers talked about the importance, the issues and the milestones in research and medical care for people with Down syndrome. No seats left in the house!
Speakers included: Global President & CEO Michelle Sie Whitten, Quincy Jones Award Recipient Frank Stephens, Dr. Brian Chicoine, Dr. Lina Patel, Dr. Michael Yeager, and Linda Crnic Executive Director Dr. Joaquín Espinosa.
Global’s 2018 NDSC Research & Medical Care Roundtable Recap
Two Global Experts Receive Prestigious National Awards
Dr. Joaquín Espinosa, Ph.D., Executive Director of the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus was awarded the National Down Syndrome Congress 2018 Pueschel-Tjossem Award.
Dr. Dennis McGuire, LCSW, Ph.D., Senior Consultant for Adult Medical Initiatives at the Global Down Syndrome Foundation, received the 2018 Down Syndrome Medical Interest Group William I. Cohen MD, Distinguished Service Award. He received the award along with his esteemed and accomplished colleague, Dr. Brian Chicoine, M.D.
More information on the honorees here
10 Captivating Workshops
Scientists, doctors, Down syndrome experts, and self-advocates presented thoughtful workshops on everything from aging in adults with Down syndrome and Alzheimer’s to teaching motor skills to advocacy training and more.
Extending the Continuum of Care: Aging Adults and Alzheimer’s Disease
Dr. Dennis McGuire, PhD, LCSW, Bryn Gelaro, LSW, and Dr. Huntington Potter, PhD
Alzheimer’s Disease and Down Syndrome
Michelle Sie Whitten, MA and Dr. Huntington Potter, PhD
An Unprecedented and Exciting Down Syndrome Research Discovery Engine –
The Crnic Institute Human Trisome Project
Michelle Sie Whitten, MA and Dr. Joaquin Espinosa, PhD
How to Teach Your Child Gross Motor Skills: Birth to Walking
Pat Winders
How to Teach Your Child Gross Motor Skills: Post Walking
Pat Winders
Promoting Unique Strengths and Resources in People with Down Syndrome
Dr. Dennis McGuire, PhD, LCSW and Bryn Gelaro, LSW
Characteristics of Co-Occurring Down Syndrome and Autism
Dr. Lina Patel, PsyD
Why Our Work is So Important & Becoming a Global Advocacy Star
Michelle Sie Whitten, MA and Frank Stephens
Educational Grants Announcement
Research & Medical Care Roundtable
For more information on any of our workshops or speakers, contact events@globaldownsyndrome.org
Pay it Forward – Educational Grants to Nine Down Syndrome Orgs
Global awarded $75,000 to nine of its member organizations, bringing the total given through its Educational Grants program to over $550K. This year’s grants will fund programs in California, Maryland, Missouri, New York, Texas, Virginia and Albania.
Global’s 2018 Educational Grants Recipients
A Standing Ovation for DeOndra and Frank
Global Ambassador DeOndra Dixon and Quincy Jones Award Recipient Frank Stephens each have their moments in the spotlight, inspiring self-advocates, their families, and Down syndrome organizations. In their unique humor and poise, DeOndra and Frank touched many hearts through their speeches, both resulting in standing ovations!
View the Photos
Crnic Institute Scientists Receive NIH and Lejeune Grants
July 26th, 2018 by Global Down Syndrome Foundation
We proudly support the important research of two of our Crnic Institute scientists, Katheleen Gardiner, Ph.D. and Michael Yeager, Ph.D. Dr. Gardiner received a R03 NIH grant to understand cognitive deficits in Down syndrome from Hsa21 orthologs on mouse chromosome 10 and Dr. Yeager received a Lejeune grant to study pneumonia in Down syndrome. NIH awarded Dr. Gardiner $52,750 from September 1, 2017 to August 31, 2019. The Jérôme Lejeune Foundation awarded Dr. Yeager $50,000 from August 18, 2017 to July 21, 2019.
Katheleen Gardiner, Ph.D.
Dr. Katheleen Gardiner is a Professor in the Department of Pediatrics at the University of Colorado Denver and the Linda Crnic Institute for Down Syndrome. Dr. Gardiner received a B.S. degree in Honors Physics from McGill University in Montreal. She then spent 2 ½ years teaching high school general science and physics in Kanye, Botswana. She received a PhD from the Department of Biophysics and Genetics at the University of Colorado Health Sciences Center, for studies on RNA processing in bacteria, work which subsequently was awarded a Nobel Prize.
During a postdoctoral fellowship at the Eleanor Roosevelt Institute in Denver, Dr. Gardiner began working on Down syndrome, initially mapping genes on human chromosome 21 at the start of the human genome project. This work led to her chairing an international committee on genomic sequence annotation when the complete DNA sequence of human chromosome 21 was generated and published in 2000. Dr. Gardiner has continued to focus her research on human chromosome 21 and Down syndrome at the Eleanor Roosevelt Institute, then at the University of Denver. She moved to the University of Colorado in 2007 and joined the Crnic Institute for Down Syndrome in 2012. Current research focuses on protein expression in mouse and human model systems of Down syndrome, and combines wet bench experimental work with computational approaches. The goal is to identify critical patterns in gene expression that underlie learning and memory deficits and to manipulate these with drug treatments to rescue cognitive deficits.
Dr. Gardiner has organized that last two international conferences on Down syndrome and the biology of human chromosome 21 (in 2007 and 2004) in Washington DC, and co-organized similar conferences in 2000 and 1997, held at the Jackson Laboratory in Bar Harbor, and the Max Planck Institute in Berlin, respectively. She recently organized a conference entitled “Cognition in Down syndrome: molecular, cellular and behavioral phenotypes and the promise of pharmacotherapeutics.” It was held in Washington, DC, April 13-15, 2013.
Michael Yeager, Ph.D.
Michael Yeager is an Associate Professor in Pediatrics and Bioengineering at the University of Colorado. He earned his Ph.D. at CU in Experimental Pathology and completed post-doctoral fellowships at Johns Hopkins Medical Institutes and National Jewish Hospital. His primary research interests have focused on inflammation and fibrosis of the lung vasculature and the right ventricle in children and adults with pulmonary hypertension and idiopathic pulmonary fibrosis. Recently, he has been investigating why persons with Down syndrome are more susceptible to infectious lung disease. He is grateful to be funded to do this work by the Linda Crnic Institute for Down Syndrome, the American Heart Association, and the Jerome Lejeune Foundation.
Two Global Down Syndrome Foundation Experts Receive Prestigious National Awards for Scientific Breakthrough and Contributions in the Medical Field
July 23rd, 2018 by Global Down Syndrome Foundation
Dallas, TX – Dr. Joaquín Espinosa, Ph.D., Executive Director of the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus (Crnic Institute), was awarded the National Down Syndrome Congress 2018 Pueschel-Tjossem Award for his scientific breakthrough recasting Down syndrome as an immune system disorder. Dr. Dennis McGuire, LCSW, Ph.D., Senior Consultant for Adult Medical Initiatives at the Global Down Syndrome Foundation (Global), received the 2018 Down Syndrome Medical Interest Group William I. Cohen MD, Distinguished Service Award for his lifetime work in behavioral and mental health for adolescents and adults with Down syndrome. He received the award along with his esteemed and accomplished colleague, Dr. Brian Chicoine, M.D.. Both awards were presented at the National Down Syndrome Congress (NDSC) Annual Convention.
Kishore Vellody, M.D., Frank Stephens, Joaquín Espinosa, Ph.D.,DeOndra Dixon, and David Tolleson
Dr. Espinosa is a nationally and internationally renowned cancer scientist. As the Executive Director of the Crnic Institute, a Global Affiliate, he oversees the Crnic Institute Human Trisome Project™, studying how Down syndrome (trisomy 21) connects to cancer, Alzheimer’s, immune system disorders, and multiple other co-morbidities. He is also a Professor in the Department of Pharmacology and founding Director of the Functional Genomics Facility at the University of Colorado Anschutz Medical Campus School of Medicine, and co-Leader of the Molecular Oncology program at the University of Colorado Cancer Center. The NDSC Pueschel-Tjossem Award recognizes research that has contributed to greater knowledge and understanding of Down syndrome and has improved the lives of people with Down syndrome and their families.
Dr. Dennis McGuire and Dr. Brian Chicoine
Dr. McGuire has more than 30 years of experience in the fields of mental health and developmental disabilities. He currently serves as Global’s Senior Consultant specializing in adult initiatives, including establishing a medical care center for adults with Down syndrome in Denver. Along with his colleague Dr. Chicoine, Dr. McGuire co-founded the Adult Down Syndrome Center of Lutheran General Hospital in Chicago, the largest, most prestigious clinic for adults with Down syndrome in the United States, where he served as Director of Psychological Services. Drs. McGuire and Chicoine co-authored two milestone books, Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome. Both doctors are serving as authors for Global’s Medical Care Guidelines for Adults with Down Syndrome – an important community service project.
The Down Syndrome Medical Interest Group-USA (DSMIG-USA) established the William I. Cohen, MD Distinguished Service Award in 2016 to honor a member for major contributions to DSMIG-USA’s mission of promoting the health and wellness of individuals with Down syndrome.
Ed McCaffrey discusses the Dare to Play Football Camp on Sirius XM NFL Radio
July 16th, 2018 by Global Down Syndrome Foundation
As the fate of a 10-year old girl with Down syndrome is decided – Global President & CEO Michelle Sie Whitten asks: Will anyone stand up?
June 20th, 2018 by Global Down Syndrome Foundation
Global Down Syndrome Foundation. Yup. That’s actually the name of our non-profit. You can say protecting people with Down syndrome is not only our mission but in our DNA. So when the issue of a 10-year old girl with Down syndrome separated from her mother in Texas came up, we naturally took notice. And, when a guest commentator on Fox News dissed even the idea of a 10-year old girl with Down syndrome as being lefty-bait for sympathy with a “womp womp” you bet we took notice.
Here’s the thing—whether you believe these separations are a matter of national security or a matter of inhumane leverage for a wall, there is no doubt the children are innocent and what they’re being put through is horrible. And the children with Down syndrome aren’t acting, they actually have Down syndrome and therefore special needs.
Unfortunately, we cannot physically protect this 10-year old with Down syndrome in Texas, but we can virtually protect her and others by demanding that she not be ridiculed or disrespected. We can allow her story to be told in a complete and civil manner.
At Global we know people with Down syndrome have idiosyncratic speech that in many cases only family members or teachers understand. So, even a fluent Spanish speaker would have difficulty in communicating with this 10-year old girl. We know that expressive language is compromised and is often 2-3x worse than receptive language, and that people with the condition depend heavily on routine to function. It is safe to say that, in all likelihood, this 10-year old girl with Down syndrome is suffering mental trauma and we strongly support her immediate reunification with her father—who is apparently a US citizen—and we are offering assistance from Down syndrome experts to the extent her detention is prolonged. Please help us to advocate- will YOU stand up? #GlobalHelpHerNow.
Michelle Sie Whitten
President & CEO
Global Down Syndrome Foundation
Congresswoman Eleanor Holmes Norton Applauds Global’s Role in Increased Down Syndrome Research Funding
June 13th, 2018 by Global Down Syndrome Foundation
After years of advocacy, the Global Down Syndrome Foundation, its research affiliate, the Linda Crnic Institute for Down Syndrome, and its nationwide network of dedicated members and self-advocates are celebrating House Labor and Health and Human Services Appropriations Subcommittee Chairman Tom Cole’s (R-OK) announcement of a historic and significant 65% increase of Down syndrome research funding at the National Institutes of Health (NIH) from $35 million in FY2017 to $58 million in FY2018.
Congresswoman Eleanor Holmes Norton (D-DC) is one of the many bipartisan leaders who is celebrating this historic moment. The Quincy Jones Award Recipient has a daughter with Down syndrome and has been a champion in helping Global move forward our advocacy work in Washington, D.C.
“I applaud the Global Down Syndrome Foundation for their unwavering and dedicated advocacy to increase NIH research funding benefitting people with Down syndrome. Global makes a strong and irrefutable moral case to give people with Down syndrome their fair share of funding. They also are providing tangible, excellent science that if funded properly by the NIH, will not only improve the lives of those with the condition but millions of others who suffer from diseases people with Down syndrome are predisposed to, or protected from. My daughter Katherine and 400,000 other Americans with Down syndrome deserve to know their government is investing their future,” Congresswoman Holmes said.
Write to Dr. Bianchi
May 24th, 2018 by Global Down Syndrome Foundation
Write to Senator Blunt
May 24th, 2018 by Global Down Syndrome Foundation
Write to Representative Holmes
May 24th, 2018 by Global Down Syndrome Foundation
Write to Representative Sessions
May 24th, 2018 by Global Down Syndrome Foundation