Nathaniel Julius Statement

September 22nd, 2020 by Global Down Syndrome Foundation

At the Global Down Syndrome Foundation (GLOBAL), we are simultaneously saddened and enraged by the tragic death of Nathaniel Julius, a 16-year-old with Down syndrome from Eldorado Park South Africa, who was shot and killed earlier this week during a police/gang-related shootout. Today, two officers involved in the shooting were arrested and charged with the murder of Nathaniel. We hope that the people responsible for this senseless killing are brought to justice. Our hearts go out to Nathaniel’s family, friends, and community during this difficult time.

*(As seen in GLOBAL’s social media on September, 1st). GLOBAL continues to follow the Nathaniel Julius case, as the now three suspected officers face the courts. We hope justice is served and our hearts go out to Nathaniel’s family and the community. See GLOBAL’s social media to keep up to date on this story.

GLOBAL’s Virtual Be Beautiful Be Yourself Fashion Show attracts an impressive roster of celebrities with a NEW DATE – Saturday, November 14, 2020

Buy Tickets to Be Beautiful Be Yourself Fashion Show Here

Press Contacts:

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

DENVER, CO August 26, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced two powerful women who will receive this year’s Quincy Jones Exceptional Advocacy Awards: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.

The awards will be presented during GLOBAL’s annual Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world, having raised over $20 million for life-changing research and medical care. Due to COVID-19 and restrictions on in-person gatherings, the event will be held virtually with a new date: Saturday, November 14, 2020.

Caterina Scorsone has starred in numerous television and film roles, portraying powerfully complex characters that have captured the hearts of audiences around the world. She is most well-known for playing the reckless, yet compelling “Dr. Amelia Shepherd” on ABC’s Grey’s Anatomy. Scorsone has three beautiful children including her three-year-old, Pippa, who was born with Down syndrome. Since the birth of Pippa, Scorsone has been a consistent supporter of GLOBAL’s work. For the last three years, Scorsone has used her formidable platform to promote greater understanding and awareness, end stigmas around people who are differently-abled, and to encourage greater access and inclusion.

Marián Ávila is an accomplished Spanish model from Barcelona, who happens to have Down syndrome. She has modelled in ad campaigns for big name brands like Levi’s and El Corte Ingles and participated in the fashion industry’s biggest Fashion Weeks, including New York Fashion Week. She has been featured in worldwide media, including leading publications such as New York Times, Vanity Fair, and Harper’s Bazaar. Ávila uses social media to meet other people and gain visibility, without judgements or labels, and to help others. She calls herself a feminist and an advocate of human rights, family, and friendship.

Other confirmed celebrities include Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; 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. More celebrities and self-advocates will be announced in the coming weeks.

The Be Beautiful Be Yourself Fashion Show will consist of a VIP Reception with more intimate celebrity experiences for table sponsors and a quality virtual event on Saturday November 14, 2020. The event will feature GLOBAL’s 2020 Ambassador Walt Snodgrass, 18 beautiful models from 7 states and 2 countries, honorees and celebrities, and special segments including a dance battle between GLOBAL Ambassador DeOndra Dixon and her big brother Jamie Foxx.

“I know that COVID-19 has led to tough times for so many,” says GLOBAL Ambassador DeOndra Dixon, “but we have to pull together and continue to support GLOBAL and people with Down syndrome in need. I will miss the runway and the audience, but I am excited to make the virtual event a success and beat my brother in an epic dance battle!”

“Most people with Down syndrome are high risk for COVID-19, so we have put a lot of effort into education and protection over the last five months,” says GLOBAL President and CEO, Michelle Sie Whitten. “The pandemic has presented GLOBAL with many challenges this year, and we’ve met each one with strength, clarity of purpose, and compassion. We hope that people will support our first virtual event and that they know we will work hard to truly save and transform lives.”

In response to the world-wide pandemic, GLOBAL has worked hard to get out multiple versions of an informative Q&A on COVID-19/Down syndrome, provide over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and support legislation that fights discrimination against those with disabilities during crisis triage care situations.

The Be Beautiful Be Yourself Fashion Show allows GLOBAL to protect people with Down syndrome during this pandemic with their COVID-19 initiatives, provide world-class care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and fund over 200 scientists working on Down syndrome research with a focus on Alzheimer’s disease, cancer, and autoimmune disorders. The event also underwrites our advocacy in D.C., resulting in a tripling of the National Institutes of Health Down syndrome research budget, as well as outreach to over 12,000 families.

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).

Amidst the COVID-19 pandemic, GLOBAL helps provide economic support, shelter, food, and medical care to Down Syndrome Organizations and the Families they serve in 23 states and 4 countries

Press Contacts:

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

DENVER, CO July 23, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) will provide over $116,000 in COVID-19 Emergency Relief Global Grants (GLOBAL Grants). The grants support over 140 families and 42 Down syndrome organizations in 23 states and 4 countries (Albania, Honduras, Kosovo, and Uganda). GLOBAL Grants are providing food, medical care, shelter support, and other critical assistance to individuals with Down syndrome and their families facing crises during the COVID-19 pandemic.

“GLOBAL is struggling financially too but we decided to convert our educational grants to COVID-19 emergency grants because the need is so great right now, and we simply needed to tap our reserves and help our Down syndrome community,” says Michelle Sie Whitten, GLOBAL President and CEO. “We didn’t think we could fund the overwhelming number of family grants but with the incredible generosity of The Salah Foundation, a private invitation-only foundation, we were able to fund every single one. My staff were literally crying as they read the applications and we feel beyond blessed to provide some modest relief.”

Below are some examples of the GLOBAL Grants:

  • In St. Louis, a grandmother and her two grandchildren who she adopted, one of whom has Down syndrome, were left homeless for four months due to limited resources and social support during this time. The GLOBAL Grant was able to pay the rent to help the family get back on their feet.
  • In Albania, desperately-needed food packages were sent to 56 individuals with Down syndrome and their families that will help them get through the winter as jobs and government support have dried up.
  • In West Michigan, a father who is a disabled veteran and a mother who was temporarily laid off from her special education job due to COVID-19 could not pay their medical bills for their child with Down syndrome who recently had heart surgery. The GLOBAL Grants provided important interim relief for the family of six.
  • In Atlanta, the GLOBAL Grant helped keep the lights on at Adult Disability Medical Healthcare allowing the clinic to continue to provide critical and high-quality care virtually to their patients including care associated with COVID-19.

“Many of our donors have frozen their support, project grants have been postponed, and unfortunately, our government left the non-profit sector out of financial support packages,” says Emanuela Zaimi, Executive Director of Down Syndrome Albania Foundation. “Feeling hopeless and exhausted, we needed support and luckily GLOBAL stepped in and provided this amazingly generous grant, making a world of difference for 56 families of our community. We are very grateful to GLOBAL and to anyone who contributes to its mission, as this help reaches us too!”

Martine Hobson, Executive Director of Down Syndrome Association of Memphis & the Mid-South, says, “We’ve been GLOBAL members for years. To see how they’ve supported Down syndrome organizations on a national scale and now supporting us in this very personalized way is a testament to their leadership and dedication to every person with Down syndrome.

“I am so proud to be part of the GLOBAL team during this crisis," says Ashley Sparhawk, GLOBAL Grants Program Manager. “It took a lot of time and work, but we have a wonderful GLOBAL Membership Advisory Board that helped and the generous Salah Foundation gift. At GLOBAL, we feel personally connected to all the professionals and families that are struggling through this difficult time and we are doing everything we can to lend a helping hand.”

The following 42 organizations received GLOBAL Grants:

1. ACDS
2. Adult Disability Medical Healthcare
3. Angel’s Center for Children with Special Needs
4. Chesapeake Down Syndrome Parent Group
5. Down Syndrome Albania Foundation
6. Down Syndrome Alliance of the Midlands
7. Down Syndrome Association for Families
8. Down Syndrome Association of Central Florida
9. Down Syndrome Association of Central New Jersey
10. Down Syndrome Association of Connecticut, Inc.
11. Down Syndrome Association of Delaware
12. Down Syndrome Association of Greater Cincinnati
13. Down Syndrome Association of Greater Richmond
14. Down Syndrome Association of Greater Winston-Salem
15. Down Syndrome Association of Memphis & the Mid-S.
16. Down Syndrome Association of Middle Tennessee
17. Down Syndrome Association of Minnesota
18. Down Syndrome Association of Northeast Indiana
19. Down Syndrome Association of the Valley
20. Down Syndrome Association of West Michigan
21. Down Syndrome Connection of the Bay Area
 

GLOBAL is working hard to protect and support people with Down syndrome during the pandemic. In addition to providing COVID-19 Emergency Relief Global Grants, GLOBAL is 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. 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.

To get the latest COVID-19 information and GLOBAL resources, visit www.globaldownsyndrome.org/covid-19

To learn more about GLOBAL’s membership program, visit www.globaldownsyndrome.org/become-a-member/

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 Webinar Series – Spring 2020 Recap

July 10th, 2020 by Global Down Syndrome Foundation

SPRING 2020

Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome

What You Need to Know


Overview

The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).


Speakers

Dr. Melissa Parisi
Chief, Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD National Institutes of Health (NIH),
DS-Connect® Registry Manager

Dr. Joaquín Espinosa
Executive Director, Linda Crnic Institute for Down Syndrome, Professor of Pharmacology, University of Colorado


PDF Presentation: Download Government Funding for DS Research

Dr. Melissa Parisi


PDF Presentation: Download Scientific Research in the INCLUDE Era

Dr. Joaquín Espinosa


Important NoticeThe Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

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 Carmichaelrcarmichael@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.

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.

Lifespan of Resources will have a National and International Impact

Press Contacts:
GLOBAL: Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Ricerhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellardbhellard@imdsa.org | C: (513) 571-4186

DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.

The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.

“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”

“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”

“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”

Expanding Collaborations:

Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.

To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.

Global Down Syndrome Foundation (GLOBAL)
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.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

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