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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


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.

Global President & CEO Michelle Sie Whitten on KOA Radio

November 6th, 2017 by Global Down Syndrome Foundation

Global President & CEO Michelle Sie Whitten on KOA #1

Global President & CEO Michelle Sie Whitten on KOA #2

WASHINGTON – The Global Down Syndrome Foundation thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for scheduling a hearing on Down syndrome research with the U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, and Education. The hearing will take place on Wednesday, October 25, 2017. Titled “Down Syndrome: Update on the State of the Science & Potential for Discoveries Across Other Major Diseases,” the hearing will be the first Congressional hearing to explore how Down syndrome research can lead to new treatments for life-altering medical conditions including Alzheimer’s disease, autoimmune disorders, and cancer. The hearing will include testimony from Rep. Cathy McMorris Rodgers (R-WA), Rep. Cheri Bustos (D-IL), and Rep. Pete Sessions (R-TX), all champions for Down syndrome research funding in Congress.

“Funding for Down syndrome research at the National Institutes of Health unquestionably affects the health of people with Down syndrome,” said Global Down Syndrome Foundation President & CEO Michelle Sie Whitten. “This important hearing will explore how current and future Down syndrome research can help people with Down syndrome and lead to life-changing treatments for devastating diseases like Alzheimer’s and cancer. We are grateful to Chairman Tom Cole and Ranking Member Rosa DeLauro for scheduling this important hearing so Congress can learn more about the broad impact of Down syndrome research for millions of people who live with this particular condition, and for countless others who can benefit from the groundbreaking medical treatments that will develop as a result.”

“The advocacy efforts of Rep. Cathy McMorris Rodgers, Rep. Cheri Bustos, and Rep. Pete Sessions have been instrumental in advancing Down syndrome research,” Whitten continued. “Their testimony will underscore the need to increase funding so we can continue these important efforts for people with Down syndrome and their families.

The Subcommittee will also hear testimony from internationally recognized researchers and leaders from the Down syndrome community including:

Michelle Sie Whitten, Founder, CEO, and President of the Global Down Syndrome Foundation

Dr. Joaquín M. Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome and Director of The Functional Genomics Facility, University of Colorado School of Medicine, and Co-Leader of the Molecular Oncology Program at the University of Colorado Cancer Center

Dr. William Mobley, Executive Director of the Down Syndrome Center for Research and Treatment, and Florence Riford Chair of Alzheimer’s Disease Research, University of California – San Diego

Frank Stephens
Actor, Author and Advocate, Board of Directors of Special Olympics Virginia

Additional information can be found on the House Committee on Appropriation web site.

Read more about the Global Down Syndrome Foundation here:

Media Contact
Name: Ed Mullen
Phone: (202) 329-4855

Anca Call
Phone: (720) 320-3832

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SOURCE Global Down Syndrome Foundation

Related Links

Global on Front Page of Denver Post

October 22nd, 2017 by Global Down Syndrome Foundation

Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation released the following statement today regarding the recent CBSN story on ‘eradicating’ Down syndrome in Iceland:

“It’s heartbreaking to see what is happening in Iceland today, and shocking to see that this level of misinformation and discrimination against people with Down syndrome still exists. While every mother and every pregnancy is unique, the fact is those born with Down syndrome can and do live long, happy and productive lives. Women making these critical decisions need to have the facts.

Educating the medical community and pregnant women with accurate and current information about Down syndrome is imperative. Global Down Syndrome Foundation and the National Down Syndrome Congress recently updated their Prenatal Testing Pamphlet for pregnant women and health providers about what to expect with a prenatal diagnosis of Down syndrome. This information is free and available in English and Spanish.

The situation in Iceland is a reminder of how important it is that Global continues to invest in medical care, education and advocacy, and that we continue to advance the world class research that is helping us better understand Down syndrome,” said Whitten.

In addition, below are specific facts about the condition in the United States:

  • Lifespan – Today, the average lifespan of a person with Down syndrome is nearly 60 years.
  • Termination Rates – The best available statistics in the U.S. are that an estimated 67 percent of women who receive an amniocentesis resulting in a positive test result for Down syndrome choose to terminate their pregnancies. But over 95 percent of pregnant women don’t even elect to receive an amniocentesis.
  • Medical Care & Research – There have been great strides in medical care and research that have doubled the lifespan of people with Down syndrome over the last 30 years.
  • Educational Opportunities – People with Down syndrome are included in public schools. Many complete high school, and increasing numbers are going to college or get vocational training.
  • Voting & Employment – Many people with Down syndrome work, volunteer and vote.
  • Marriage, Siblings & Self-advocates – Despite potential challenges, personal accounts and studies show most families that have a child with Down syndrome are stable, successful and happy, and that siblings often report having increased levels of compassion and empathy. One major study on marriages and Down syndrome shows that the divorce rate among parents of children with Down syndrome is lower than the national average.

For the most current, accurate information and resources associated with people with Down syndrome visit