Archive for the ‘In the News’ Category

Global President & CEO Michelle Sie Whitten on KOMO News Radio

March 22nd, 2019 by Global Down Syndrome Foundation

Global President & CEO Michelle Sie Whitten on KOMO News Radio

John C. McGinley on Hallmark Channel’s Home & Family

October 25th, 2018 by Global Down Syndrome Foundation

Debbie Matenopoulos and Cameron Mathison welcome actor John C. McGinley.


“I want to thank you again for your testimony and for your advocacy, which has been extraordinary and has really made an enormous difference in the lives of literally thousands and thousands of individuals and families.”
 
“There really aren’t many reasons why we shouldn’t see more focus on Down syndrome than we have in recent years so it’s our hope and expectation that that will happen.”

 
    – Chairman Tom Cole (R-OK)


“You could have easily taken care of your own child, … but what you’ve chosen to do is really extraordinary: to take this experience and to be responsible for thousands and thousands and thousands of youngsters who are out there. That really is in another element.”
 
“The key is the research and what you’re doing is exactly the right thing … Your advocacy and that of families and others out there will make a difference.”

 
    – Ranking Member Rosa DeLauro (D-CT)

PRESS RELEASE

FOR IMMEDIATE RELEASE
Ed Mullen | acall@globaldownsyndrome.org | 720-320-3832

Global Down Syndrome Foundation Testifies at the FY2019 Public Witnesses Hearing and Thanks House Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Testimony focuses on reversing two decades of decreased and flat funding and positive new language in the 2018 Omnibus Bill

WASHINGTON, D.C. – Thursday, April 26th – The Global Down Syndrome Foundation (Global) thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for inviting its President and CEO, Michelle Sie Whitten, to testify at the House Subcommittee on Labor, Health and Human Services, and Education and Related Agencies FY2019 Public Witness Hearing. Whitten provided a five minute testimony on the importance of increased funding for Down syndrome research and highlighted the twenty year decline and flat funding for the condition.

Whitten testified, “For Global and the Down syndrome community, our hope is that this esteemed committee can help us to ensure that the National Institutes of Health (NIH) will take advantage of the generous $3 billion in new funding included in the FY2018 Consolidated Appropriations Act…In particular, we hope that the funding of research benefitting people with Down syndrome will increase significantly from FY2017 to FY2018 and then again from FY2018 to FY2019, and that the increase will be seen in both the current pipeline of Down syndrome research and the new trans-NIH Down syndrome research initiative.”

Last year, with support from Reps. McMorris Rodgers, Sessions, Bustos and Coffman, and under the leadership of Cole and DeLauro, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome where Global also testified and presented compelling Down syndrome research.

As a result of that historic hearing, in March of 2018, Congress included funding for the new trans-NIH initiative to study Down syndrome in the Fiscal Year 2018 Omnibus Appropriations legislation. The provision, supported by Global, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.

The FY2019 Public Witness Hearing on Thursday, April 26th was held at the Rayburn Building on Capitol Hill on Thursday, April 26th and featured twenty-one important advocacy groups listed below:

American Alliance of Museums, Elder Justice Coalition, Institute for Higher Education Policy, Boys & Girls Clubs of Oklahoma County, Inc., Global Down Syndrome Foundation, American Association of Nurse Practitioners, Alzheimer’s Association and Alzheimer’s Impact Movement, The Christopher & Dana Reeve Foundation, Center for Key Populations at Community Health Center, Inc., National Association of State Long-Term Care Ombudsman Programs, Michigan Works! Association, National Association of County and City Health Officials, Alliance for Biosecurity, National AHEC Organization, Coalition for Health Funding, Susan Chacon, President, Association of Maternal & Child Health Programs, American Dental Association, National Indian Health Board, American Association of Colleges of Nursing, National Council for Community and Education Partnerships, Trust for America’s Health

For the most current, accurate information and resources associated with people with Down syndrome, visit www.globaldownsyndrome.org/facts.

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visitwww.globaldownsyndrome.org.

As the head of Global Down Syndrome Foundation and as the mother of a 14-year old with Down syndrome, I believe I speak on behalf of a large community when I say I am thrilled and deeply appreciative that Lucas Warren has been selected as the 2018 Gerber Spokesbaby! To be chosen from 140,000 other contestants is truly remarkable – all the more so because Lucas happens to have Down syndrome.

While the human and civil rights movement of the 1960s and 1970s have afforded us many gains, there is still widespread discrimination against people with Down syndrome (for example in schools and medical practices), primarily due to lack of education. To have Lucas be the Gerber Spokesbaby for the entire year is a huge step towards awareness and inclusion.

In the U.S. we can proudly point to ethnic and gender diversity, but we still have a ways to go in promoting the differently-abled. Sesame Street was perhaps first with a child in a wheelchair being featured. Today we can thank OshKosh, Target, Babies “R” Us, Old Navy, Kmart and other stores for highlighting the differently-abled, including models with Down syndrome in their advertisements.

The Gerber Baby choice is perhaps even more meaningful since the historic marketing emphasizes the “perfect baby.” An aspiration for what all parents presumably want – a baby that is beautiful, healthy, and happy. By choosing Lucas, I believe the message is that babies with Down syndrome are no different from typical babies and can be seen as adorably perfect.

Everyone at the Global office was bouncing off the walls today for this small, but important victory in awareness. We congratulate the Warren family and Gerber, and we look forward to supporting all of Lucas’ efforts throughout 2018 as “the” Gerber Spokesbaby.​


Fox 31 Gerber’s new ‘spokesbaby’ has Denver Down syndrome charity buzzing

Lucas Warren became the first Gerber Baby with Down Syndrome. And at a Denver charity, it couldn’t be more ecstatic.

WATCH NOW


Reuters In a first, Gerber names boy with Down syndrome ‘Spokesbaby’

An 18-month-old boy with Down syndrome has been named by baby food maker Gerber as its “Spokesbaby” for 2018, the company said on Wednesday, an action hailed by advocates for people with the genetic condition.

READ MORE

Global CALLS OUT NETFLIX for anti-disability,
anti-Down syndrome rhetoric

January 19th, 2018 by Global Down Syndrome Foundation

With the #Metoo movement in full swing and the 1st Anniversary of the Women’s March looming, it’s shocking to see Netflix promoting its newest stand-up show aptly called “Disgraceful.”   Netflix promotes the show by claiming its comedian “…gives voice to the sordid thoughts you’d never say out loud, with blunt musings on porn, parking lot power struggles, parenthood and more.”

Apparently sordid thoughts about the disabled and people with Down syndrome are fair game. In fact, the show’s anti-disability sketch was deemed so funny by Netflix that it is used in their trailer. 

At the Global Down Syndrome Foundation we are grateful for the freedoms we have in the US – including freedom of speech.  AND YET, 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.  I would argue the ‘R’ word is exactly such a word – witness Willowbrook, NY to Pueblo, CO today.  The best essay I have read on this subject is written by our board member and renowned actor, John. C. McGinley (after you read it you will have a “Captain My Captain” moment).

Sometimes it is hard to advocate.  I’m a working mom, I’m perpetually tired so I get it. But we can all take a moment to post, like, share, or petition.  And WHY NOT demand Netflix to:

  • Edit out the anti-disability and anti-Down syndrome rhetoric in the show?  
  • Immediately take the appalling sketch out of their trailer?
  • Issue an apology for failing to use humanity as the demarcation line for comedic depravity?

What we are asking for is NOT too much or too difficult.  There are lots of depraved topics that are funny (disclosure – I’m half NJ Italian) that don’t lend themselves to violence or oppression.  So, you can still get that cheap laugh and feel good about yourself. 

It’s time to call folks out. Seriously, we have nothing to lose. 

Michelle Sie Whitten, President and CEO, Global Down Syndrome Foundation

Read John C. McGinley’s essay, Spread the Word to End the Word

Read full article on The Mighty

Should Congress provide more funding for Down syndrome research?

 

There remains a significant and persistent disparity in federal funding for Down syndrome research. Fortunately, at the recent hearing on Down syndrome referenced in the editorial, there was overwhelming bipartisan support for increased federal funding.

As Congress finalizes the final fiscal year 2018 spending bill, we are hopeful, thanks to the strong support of Sens. Roy Blunt, R-Mo., and Patty Murray, D-Wash., and Reps. Tom Cole, R-Okla., and Rosa DeLauro, D-Conn., that the bill will include a recommendation to provide a significant increase in federal funding for Down syndrome research and launch a new trans-NIH initiative that studies immune system dysregulation and Down syndrome.

We are deeply grateful for their support, as well as the bipartisan support from the Colorado congressional delegation.

Michelle Sie Whitten, Denver

The writer is president and CEO of the Global Down Syndrome Foundation.


Congress should give it up for Down syndrome research

PUBLISHED:  | UPDATED: 
 

On levels both moral and practical, Congress has for years been failing those born with Down syndrome and their families. We hope the new year brings about a stark reversal in the second-class treatment this unique population is receiving.

Lawmakers should greatly increase Down syndrome funding for research and assistance. According to analysis by the Denver-based Global Down Syndrome Foundation, the syndrome is one of the least funded genetic conditions supported by the National Institutes of Health, yet it is the leading cause of developmental disability. In 2001, NIH spent $29 million for Down syndrome research, a figure that plummeted to as low as $14 million even as NIH’s budget grew. Had funding tracked with that of NIH, spending on the syndrome from 2001 to 2017 would have more than doubled the $356 million allocated.

Yet Down syndrome funding is likely to see a 22 percent decrease in 2018, from $27 million to $21 million, when the reality on the ground suggests it should be much greater.

During this long period of neglect, thinking about Down syndrome has begun to change. Advances in education and care have improved life expectancy from 28 years in the 1980s to 60 years today. Quality of life and cultural acceptance have improved.

As Michelle Sie Whitten, the president and CEO of the Global Down Syndrome Foundation, put it to us, there has been a mini population explosion. Fewer women are choosing to end pregnancies. In 2002, Down syndrome babies numbered 1 per 1,000 births. Today it’s 1 per 691.

Whitten says there are likely more than 430,000 thousand people with Down syndrome living in the United States presently, and now that many will outlive their parents, research and aid will only become increasingly important.

Meanwhile, groundbreaking work (much of being done here in Colorado by the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome and the Rocky Mountain Alzheimer’s Disease Center) suggests research into this unique population with its extra chromosome can lead to discoveries beneficial to the broader population. The nature of the syndrome offers many opportunities, as those born with it are far more susceptible to leukemia or suffer from an autoimmune disorder, and all of them will develop the brain pathology of Alzheimer’s in their 40s. And yet they are all but impervious to solid tumor cancers and heart attack. What might greater research into the particular disease spectrum and genetic differences discover to assist others with those afflictions?

In October, the actor and Special Olympian Frank Stephens gave landmark testimony before a Congressional committee. In urging greater funding for Down syndrome research, he pointedly addressed the bias behind the anemic current levels, saying, “Sadly, across the world, a notion is being sold that maybe we don’t need research concerning Down syndrome. Some people say prenatal screens will identify Down syndrome in the womb and those pregnancies will just be terminated.”

Certainly, we support a woman’s right to chose in this and other situations. But given the promising work already being done in Down syndrome research, the need for better information for pregnant women to help them make their choice, and the needs of the many families who do have Down syndrome members, the current federal approach would be as wrongheaded as it would be inhumane.

Michelle Sie Whitten, who heads the Denver-based Global Down Syndrome Foundation, has big hopes for new research at the University of Colorado, where scientists say they have upended the conventional wisdom that Down syndrome is a brain disorder. Instead, they classify it as a malfunction of the immune system.

Crnic Institute study published in American Scientist Magazine

December 26th, 2017 by Global Down Syndrome Foundation

People with Down syndrome are the largest human population with a genetic predisposition to develop early-onset Alzheimer’s disease. By the time they reach age 40,100 percent of people with Down syndrome develop the brain pathology of amyloid plaques and neurofibrillary tangles that precede cognitive decline, and a fraction (4 percent to 55 percent) go on to develop dementia by age 59. If researchers could understand why, it could help both people with Down syndrome and those with Alzheimer’s disease.