Archive for June, 2020

Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.

The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.

The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.

“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”

In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.

To support GLOBAL’s work, please consider a donation.

To learn more, visit: www.bebeautifulbeyourself.org

To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

GLOBAL Recap of the 2020 NDSC Annual Convention From Your Couch

June 25th, 2020 by Global Down Syndrome Foundation


Engaging Roundtable Discussion

During GLOBAL’s Roundtable, speakers presented on COVID-19, breakthrough research, & more.
GLOBAL’s 2020 NDSC Research & Medical Care Roundtable Recap



Frank Stephens, GLOBAL Ambassador &
Q-Award winner,
The Importance of Research for People with Down Syndrome


Ed Janoff, MD, CU Professor of Medicine-Infectious Disease, Living Safely with Down Syndrome in the Age of COVID-19


Karen Gaffney, GLOBAL Q-Award winner,
Living Safely with Down Syndrome in the
Age of COVID-19


Kelly Sullivan, Boettcher Investigator & Assistant Professor, Crnic Institute, Immune System Dysregulation in Down syndrome


Mike Rafii, MD, PhD, Medical Director of the Alzheimer’s Therapeutic Research Institute, Alzheimer’s Disease in Down Syndrome



Joaquin Espinosa, Executive Director of the Crnic Institute, Immune modulation in Down syndrome and COVID-19


Mike Ybarra, MD, FAAEM, FACEP, PhRMA,
The Biopharmaceutical Industry’s Efforts
to Beat Coronavirus


Michelle Sie Whitten, MA, GLOBAL President & CEO, Our Response to COVID-19 and the “COVID 19 & Down Syndrome Q&A” Collaborative


Kent McKelvey, MD, Associate Professor in Medical Genetics & Family Medicine, Medical Guidelines For Adults with Down Syndrome


Melissa Parisi, MD, PhD, NICHD National Institutes of Health, DS-Connect Registry Manager, Promising Research at the NIH

 

GLOBAL Receives Prestigious Award

NDSC presented GLOBAL with the 2020 Pueschel-Tjossem award for the Global Medical Care Guidelines for Adults with Down Syndrome. GLOBAL President & CEO Michelle Sie Whitten and Bryn Gelaro, LSW, who have worked diligently over the past several years to accomplish this, accepted the award.

 


Zack Gottsagen Q&A

Zack Gottsagen was the keynote for the closing ceremony of the NDSC Annual Convention From Your Couch. Zack is an award-winning actor, best known for his breakout film The Peanut Butter Falcon, where he starred alongside Shia LaBeouf and Dakota Johnson. GLOBAL is proud to be an Executive Producer of the film.


Captivating Workshops

GLOBAL scientists, clinicians, Down syndrome experts, and self-advocates presented thoughtful workshops on topics and resources for adolescents and adults with Down syndrome, parents and caregivers, medical professionals, and more.

Promoting Strengths and Adaptive Resources in Persons with Down Syndrome
Dennis McGuire, PhD, Senior Consultant of Global Down Syndrome Foundation

Common Questions (And Answers!) about Health Conditions in Adolescents and Adults with Down Syndrome
Brian Chicoine, MD, Medical Director of Advocate Medical Group Adult Down Syndrome Center

Desensitization to Use of Medical Equipment and Procedure Related Distress
Lina Patel, MD, Director of Psychology at Sie Center for Down Syndrome

An Important New Resource: Global Medical Care Guidelines for Adults with Down Syndrome
Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation
Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at Global Down Syndrome Foundation
Brian Chicoine, MD, Medical Director of Advocate Medical Group Adult Down Syndrome Center

Research & Medical Care Roundtable

For more information on any of our workshops or speakers, contact events@globaldownsyndrome.org

Ed Janoff, MD

June 22nd, 2020 by Global Down Syndrome Foundation

Ed Janoff, MDProfessor of Medicine, Immunology and Microbiology
University of Colorado Denver; Infectious Diseases

Dr. Janoff’s day job is to treat infectious diseases, and his passion is to prevent them. His research focuses on the development of systemic and mucosal immune responses, particularly antibodies, to provide primary protection against infection, infants, older adults and, more recently, people with Down Syndrome. He has studied mother-to-child transmission of HIV, pneumococcal pneumonia, influenza and, now, COVID-19. His goal is to understand and to teach others about what host factors are important in eliciting natural defense against respiratory infections and the protection provided by vaccines.

Christian & Ed McCaffrey Surprise Military Family in Grand Fashion

June 20th, 2020 by Global Down Syndrome Foundation

June 2020 Newsletter

June 17th, 2020 by Global Down Syndrome Foundation

Our 2020 Fashion Show Celebs, Down Syndrome & COVID-19, Black Lives Matter and more.

Against odds, Kenosha woman is ‘star of the show’

June 15th, 2020 by Global Down Syndrome Foundation

2020 Virtual Spring Performance | Be Beautiful Be Yourself Dance Program

June 12th, 2020 by Global Down Syndrome Foundation

GLOBAL Statement – Black Lives Matter Movement

June 5th, 2020 by Global Down Syndrome Foundation

Dear Families, Friends and Colleagues,

The Global Down Syndrome Foundation (GLOBAL) is deeply saddened by the senseless killing of George Floyd. We mourn for his family and every person who has been a victim of violent acts perpetrated in hateful discrimination.

Today we stand together with people from all over the world. We call for justice and demand systemic change that will protect us from racism, discrimination and brutality. Even beyond protection we demand real change that provides equity in research, medical care, education, the justice system, and every area that allows us freedom and the opportunity of good health, productivity, and happiness.

We maintain that if you believe in the inalienable rights for one group you must believe in them for all people. As Congresswoman Eleanor Holmes Norton said “You can’t be for women’s rights and not for disability rights. You can’t be for disability rights and not believe in racial equality. You can’t believe in racial equality and not in the LBGT community. The only true narrative is equity for all humankind.”

People with intellectual and developmental disabilities and their family members can relate to discrimination based on our own differences – and to a history that includes the Willowbrook State School and Aktion T4 murders.

At GLOBAL we condemn racism and discrimination in all forms. Black Lives Matter to us and to the world.

Wishing you health, safety and hope during these difficult but transformative times,
Michelle Sie Whitten and the GLOBAL Team

Make Your Voice Heard. We encourage you to help educate your communities by sharing information and resources on social media using the #BlackLivesMatter hashtag.