Archive for the ‘Events’ Category

Global Recap of 2019 NDSC Annual Convention in Pittsburgh

June 29th, 2019 by Global Down Syndrome Foundation


Left to right: Dr. Joaquín Espinosa, Dr. Laurie Ryan, Dr. Dennis McGuire, Dr. Mike Rafii, Dr. Peter Bulova, and Dr. Huntington Potter

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: Quincy Jones Award Recipient Megan Bomgaars, and Global scientists & clinicians Dr. Mike Rafii, Dr. Laurie Ryan, Dr. Huntington Potter, Dr. Joaquín Espinosa, Dr. Peter Bulova, and Dr. Dennis McGuire.

Global’s 2019 NDSC Research & Medical Care Roundtable Recap




Left to right: Dr. Vellody and his brother Das present Dr. Joaquin Espinosa with 2019 President’s Award

Global Receives Prestigious President’s Award

The Global Down Syndrome Foundation was honored to accept the prestigious President’s Award at the 2019 NDSC Annual Convention. Presented at the Annual Convention Opening Session, Global was awarded for their dedication to Down syndrome research, their unprecedented advocacy work, and their tremendous positive impact on the Down syndrome community. Global’s longstanding relationship with the National Down Syndrome Congress will continue to flourish and together, they will work to improve the lives of individuals with Down syndrome.




Patricia Winders Honored

The Sie Center for Down Syndrome’s Director of Therapies & Senior Physical Therapist, Pat Winders, won an award for her poster on motor development for children with Down syndrome at the Down Syndrome Medical Interest Group Conference held in in Pittsburgh.



Left to right: Dr. Mike Rafii, Dr. Jaoquin Espinosa, Dr. Huntington Potter, and Dr. Laurie Ryan

Captivating Workshops

Global scientists, clinicians, 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.

An Unprecedented and Exciting Down Syndrome Research Discovery Engine – The Crnic Institute Human Trisome Project
Dr. Joaquín Espinosa, PhD

How to Teach Your Child Gross Motor Skills – Birth to Walking
Patricia Winders

Promoting Strengths and Adaptive Resources in Persons with Down Syndrome
Dr. Dennis McGuire, LCSW, PhD

How to Teach Your Child Gross Motor Skills – Post-Walking Skills
Patricia Winders

Alzheimer’s Disease and Down Syndrome
Dr. Huntington Potter, PhD

CPAP, Hearing Aids, & Glasses, Oh my! How to Help my Child Wear Their Medical Equipment
Dr. Lina Patel, PsyD

Making the Most of a Behavioral Health Consultation for Adults with Down Syndrome
Dr. Dennis McGuire, LCSW, PhD and Bryn Gelaro, LSW

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 12 Down Syndrome Organizations

In 2019, Global awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, Global has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations.

Global’s 2019 Educational Grants Recipients


At Global, we were shocked about the suggestions to cut the already scarce funding for students with special needs (12% of our students BTW!) and to completely defund Special Olympics. This past week, we saw our congressional heroes fiercely support maintaining funding, including leadership from both sides of the aisle – Congresswoman Rosa DeLauro (D-CT) and Senator Roy Blunt (R-MO) (both Global’s Q-Award Winners). THANK YOU!

We are pleased that Congress and President Trump heard the concerns of those who are differently-abled and that the government will continue to support the incredible Special Olympics program. PLEASE make sure you also safeguard funding for our students with special need in public school who deserve a chance to learn and reach their potential!

Global, Alzheimer’s Association, and other nationals co-organized a seminal third workshop recruiting some of the best minds in the field of Down syndrome and Alzheimer’s disease.
See an overview of the event here.

World Down Syndrome Day – Denver

February 25th, 2019 by Global Down Syndrome Foundation

Save the date for World Down Syndrome Day 2020!

Saturday, March 21, 2020

Down syndrome is caused by having 3 copies of chromosome 21. As such, the United Nations and over 100 countries, chose 3/21, to celebrate World Down Syndrome Day. Global celebrates with hundreds of advocates at the Colorado Capitol and activates families across the country with the Global Lights the Way Campaign.

If you have any questions, contact: events@globaldownsyndrome.org or
 call 720-548-5626.

View Photos

2018 DC Briefing

September 29th, 2018 by Global Down Syndrome Foundation

Cancer & Down Syndrome Explained at Amgen/Global Congressional Briefing

On September 14, 2018, Biotech powerhouse Amgen and the Global Down Syndrome Foundation (Global) hosted a first-in-kind Congressional Briefing attracting world-renowned cancer speakers from both the science and the medical fields. This important DC briefing attracted health staffers from both sides of the aisle, numerous families, and self-advocates. Attendees learned about the increased risk of leukemia and the decreased risk of solid tumor cancers for people with Down syndrome and how Congress and the NIH can support Down syndrome-Cancer research.

Key speakers included Joaquín Espinosa, Ph.D., the Executive Director of the Linda Crnic Institute for Down Syndrome and co-Leader of the Molecular Oncology Program at the University of Colorado; Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation; John D. Crispino, Ph.D., Professor of Medicine (Hematology and Oncology) and Biochemistry and Molecular Genetics and Northwestern University; and Joan D. Morris, M.D., Global Development Research Clinical Medical Director at Amgen.


Photo Cred: Michael Campbell Photography

Learn more about the latest Down syndrome-Cancer research and how Global is lobbying Congress to get more funding from the NIH for these important discoveries.


GLOBAL RECEIVES MULTIPLE AWARDS

September 10th, 2018 by Global Down Syndrome Foundation

Michelle Sie Whitten receives Newsed CDC’s prestigious Civil Rights Award, along with Rep. Diana DeGette (D-CO), and other human rights activists

As Michelle Sie Whitten, the President & CEO of the Global Down Syndrome Foundation (Global), fights for the rights of people who are differently-abled, the community takes notice. Global is at the forefront of groundbreaking research, medical care, education, and advocacy efforts dedicated to significantly improving the lives of individuals with Down syndrome. This year, a decade of Global’s work with Congress and the National Institutes of Health resulted in the first real increase in federally-funded Down syndrome research and medical care – a $23M increase for 2018 and an additional $40M for 2019. Recognized as a true champion for the Down syndrome community, Whitten and Global receive prestigious awards for leadership and advocacy.

NEWSED Community Development Corporation Civil Rights Award

For more photos & videos from this event, visit Latin Life Denver

NEWSED Community Development Corporation (CDC) is a nonprofit, started 47 years ago, that strives to improve economic issues in disadvantaged and underrepresented communities. At NEWSED CDC’s 27th Civil Rights Awards ceremony, inspiring people and organizations were honored and recognized for their hard work in human and civil rights. The event honored six community leaders with the prestigious award, including Global President & CEO, Michelle Sie Whitten. Upon receiving her award, Whitten thanked NEWSED, other awardees and co-honoree Congresswoman Diana DeGette for helping advocate for research and medical care funding for those with Down syndrome. She also referenced the wisdom of Congresswoman Eleanor Holmes Norton, that you cannot believe in the rights of one population without believing in the rights of them all. “Global is part of a bigger movement,” says Whitten, “showing that differently-abled are important.”

2018 NEWSED CDC Civil Rights Awardees (in order of appearance):
1.Dr. Lorenzo Trujillo, Attorney and Music Professor at Metropolitan State University of Denver
2. Dr. Martha Urioste, Legendary educator and community leader in the Denver Public School System
3. Diana DeGette, U.S. Representative for Colorado
4. Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation
5. The Greater Metro Denver Ministerial Alliance, an organization advocating for freedom and equality and holding public officials accountable for their decisions
6. La Academia, a school of learning that has sense closed its doors, was honored for their commitment to helping students and the community.


Michelle Sie Whitten Honored at ARC Thrift’s 50th Anniversary with Distinguished Disability Leadership Award for her life-saving and life-changing work at the Global Down Syndrome Foundation

At ARC Thrift’s 50th anniversary “Born to Be Me” Gala, Global President & CEO Michelle Sie Whitten received ARC’s Distinguished Disability Leadership Award. The award recognizes leaders in Colorado who give their hearts, souls, time, and passion to advocating for people with disabilities. The annual event was held at the Hyatt Regency Denver at Colorado Convention Center, welcoming approximately 800 guests. ARC’s CEO, Lloyd Lewis, and his son Kennedy, presented the award to Michelle and her daughter, Sophia.

ARC Thrift Stores is one of Colorado’s largest nonprofits with funding over $100 million and one of the state’s biggest employers of people with intellectual disabilities. Global is honored to work with the incredible people at ARC in our joint mission of improving the lives of those who are differently-abled.



 

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

Uganda celebrates World Down Syndrome Day 2018!

March 23rd, 2018 by Global Down Syndrome Foundation

Global was proud to join forces with the Global Livingston Institute to bring local organizations, families and children with Down syndrome together in Uganda’s capitol city of Kampala to celebrate World Down Syndrome Day! The theme of the event was social inclusion, and over 300 people came out to celebrate and create awareness about Down syndrome. Other organizations based in Uganda that came together to make the day a success included EmbraceKulture, Children’s Clinic Naalya, The Uganda Down Syndrome Association, and Angel’s Center for Children with special needs. Way to go GLI Team on an impactful WDSD Uganda 2018!

Other related press & videos highlighting Down syndrome in Uganda and the work of local organizations involved:

NBS Interview – Rosemary Nambooze & Dr. Daniel Tumwine


NBS Interview – Daphine Murungi


NTV Article – Daphine Murungi Feature


NTV Article – Olivia / EmbraceKulture Feature


The Monitor – Rosemary Article

Light the Way 2018

March 22nd, 2018 by Global Down Syndrome Foundation

Global is so grateful to First Lady Valerie Sununu of New Hampshire and First Lady Robin Hickenlooper of Colorado for chairing the Light the Way Campaign, an initiative started in 2011 by First Lady Mary Pat Christie of New Jersey to shine a light on the groundbreaking advances being made to empower individuals with Down syndrome! We are honored to have partnered with First lady Sununu and First Lady Hickenlooper to highlight Global’s initiatives that are making a difference for people with Down syndrome throughout the country.

On the evening of Wednesday, March 21st as part of the Light the Way campaign, New Hampshire and Colorado lit the Governor’s Residences in blue in recognition of Down syndrome research. This date has particular significance as Down syndrome results from the presence of three copies of chromosome 21. Below are all the participating states from 2018!

Colorado
New Hampshire
New Jersey
North Carolina
Oklahoma
Virginia
Wyoming
Minnesota
New Mexico
Ohio
Tennessee
Texas
West Virginia
Arkansas
Indiana
Pennsylvania
Illinois
Kansas
Maryland
Wisconsin
Montana
Puerto Rico

Yesterday & Today: World Down Syndrome Day 2018

March 13th, 2018 by Global Down Syndrome Foundation

Global Down Syndrome Foundation recognizes World Down Syndrome Day as a chance to reflect on the progress we have made, and on our hopes for the future.

 

YESTERDAY: The life expectancy of a person with Down syndrome was only 28 years in the 1980s.

TODAY: Today in the US, the life expectancy is nearly 60 years!

The discrimination against people with Down syndrome can be profound. Children and adults with the condition are still deprived of lifesaving medical care. There are also too few medical professionals who understand that patients with Down syndrome are highly predisposed to certain diseases and highly protected from others.

At Global we are working to continue this significant increase of lifespan for people with Down syndrome through improved medical care.


 

 

YESTERDAY: In the US, people with Down syndrome weren’t allowed to attend public schools until the 1970s.

TODAY: Students with special needs get a free and appropriate public education required by law.

Despite many advances since the 1970s, so many parents are still battling the education system to enforce their rights. At the same time they are trying to unlock how their children and adults with Down syndrome can learn better.

At Global we are working to help ensure improved health outcomes (including in sleep, speech, hearing and vision) that we believe will allow students with Down syndrome to reach their true potential.


 

 

YESTERDAY: In the US, the accepted terminology for people with Down syndrome used to be “mongoloid” and “mentally retarded.”

TODAY: Thanks to Rosa’s Law, “mental retardation” was replaced with “intellectual and developmental disabilities” in all federal documents.

We believe in freedom of speech. But we also believe that our community must demand respect through language, and stand up to those who would bully us with words. Through our training and our advocacy we educate medical and research professionals in “people first” language and we have stood up to bullies using the “R” word and worse.

At Global we are advocating for equality and respect in Washington, D.C. and throughout the world.


 

 

YESTERDAY: In U.S. hospitals, starving a baby to death with Down syndrome, or another intellectual disability, was allowed until the 1981 passing of the “Baby Doe Law.”

TODAY: This year we are celebrating Lucas Warren as the “healthy, happy, perfect” 2018 Gerber Spokesbaby – Lucas happens to have Down syndrome!

In Iceland, Denmark and other countries where the government boasts a “Down syndrome-free” future, the eugenics framework is marked and frightening. Standing on the shoulders of our human and civil rights predecessors of the 1960s and 1970s, we must be vigilant to ensure that our children and adults have rights, and are valued, equal citizens – in the U.S. and abroad.

Global advocates for our government to invest in people with Down syndrome and for people with the condition to be recognized throughout the world.


 

 

TODAY: The Sie Center for Down Syndrome at Children’s Hospital Colorado provides life-saving and life-changing medical care to over 1,400 children with Down syndrome.

TOMORROW: Global envisions a world where we are able to establish a network of pediatric AND adult medical centers providing EXCELLENT care to millions of people with Down syndrome!

On this World Down Syndrome Day, Global is grateful for the amazing progress we have made together—we have created a pipeline of excellent science that informs our excellent medical care benefitting thousands of people with Down syndrome.

To be sustainable and to GROW so as to help ever more people with Down syndrome, we are grateful to you for your on-going support and trust in us to make a positive, tangible difference.

THANK YOU for allowing us to save and improve lives. Happy World Down Syndrome Day!!