Archive for the ‘Blog’ Category

From Down Syndrome World 2018 Issue 2 of 4

In February 2018, a little boy with Down syndrome took the world by storm with his contagious smile, bright blue eyes and charming personality. His name is Lucas Warren, and he’s the first-ever Gerber Spokesbaby with Down syndrome.

The nearly century-old Gerber Products Company is an iconic brand that sells baby food and baby products. Often recognized by its trademark logo, a drawing of the first Gerber Baby, Ann Turner Cook, the company selects a new Gerber Spokesbaby each year. The 1-year-old from Dalton, Georgia, was chosen from 140,000 other contestants to be the Gerber Spokesbaby for the entire year. The Gerber brand personifies the healthy, happy, perfect baby. Choosing Lucas as the 2018 Gerber Spokesbaby challenges negative stereotypes about people with Down syndrome and makes an important statement about inclusion and diversity of those who are differently-abled. Global was able to share the excitement of this historical moment during an exclusive interview with Lucas’ parents, Cortney and Jason Warren.

DOWN SYNDROME WORLD™: TELL US ABOUT THE MOMENT YOU LEARNED LUCAS WON THE GERBER CONTEST.
Cortney and Jason: Our first reaction was shock and doubt, followed by extreme excitement for Lucas! We weren’t able to tell our families and friends until after it was announced.

WHAT AN EXCITING TIME SINCE LUCAS WON! HE HAS MILLIONS OF FANS ON SOCIAL MEDIA, AND EVEN INTERVIEWS ON THE TODAY SHOW. WHAT IS IT LIKE TO BE FAMOUS?
It is a proud moment for us as par ents knowing that Lucas has a platform to spread joy, not only to people he comes in contact with daily but to people all over the U .S. We are so happy that he will have this moment to look back on in the futur e and feel proud.

WHAT ARE LUCAS’ RESPONSIBILITIES AS THE 2018 GERBER SPOKESBABY?
Lucas will represent Gerber in advertisements, social media, and more throughout the year, representing joy and love. In addition, he receives $50,000 for his Spokesbaby title, which we plan to use toward his education.

WHAT HAS SURPRISED YOU ABOUT LUCAS?
What has surprised us the most about Lucas is Lucas himself. Being our first child, and having Down syndrome on top of that, everything is new to us. Seeing him pick up on milestones faster than what doctors and therapists say he should makes us feel so proud of him. He continues to show his doctors, therapists, friends, and family that there are no limits for him.

WHAT DO YOU HOPE HAVING LUCAS AS THE GERBER SPOKESBABY WILL DO FOR THE DOWN SYNDROME COMMUNITY AND SOCIETY IN GENERAL?
We hope this announcement will impact ever yone and shed light on the special needs community. We hope Lucas as the Gerber Spokesbaby will help educate more people that individuals with special needs should be accepted, not limited, and therefore have the potential to change the world.

Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

REALLY? Insulting people who are victims of sexual abuse and people who were incensed by crass racist comments wasn’t enough? ANOTHER NETFLIX comedian has to take a swing at people with Down syndrome?

And while the Tonight Show starring Jimmy Fallon did the right thing and CANCELLED Norm Macdonald’s scheduled appearance on it show, NETFLIX is once again supporting the “R” word, disparaging comments about people with Down syndrome, and even social media promoting violence against advocates for people who are differently-abled.

The WILL of the people defending against sexual and abuse and racism was heard. I am counting on those same people to come together for those who are differently-abled and make sure this population also has a STRONG a VOICE. PLEASE. Let us come together and send Netflix a message to CANCEL THIS SHOW! And if they don’t cancel the show, consider cancelling your NETFLIX subscription. For a day, a month, anything that shows power in numbers WHO CARE.

For Norm, glad you apologized. But REALLY? You needed a word for “stupid” and you came up with “Down syndrome”? I call on you to spend a day with a person with Down syndrome and then see if you can’t come up with a better word.

To be clear, 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 discrimination against a vulnerable population. 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 discrimination or oppression. So, you can still get that cheap laugh and feel good about yourself.

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

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

“Peanut Butter Falcon” film star, Zack Gottsagen, to receive Global’s 2018 Quincy Jones Award

With the #Metoo movement in full swing and the 1^st 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

DENVER  |  The Global Down Syndrome Foundation announced today that it has translated important prenatal testing information into Icelandic and provided the resource to the Icelandic Down Syndrome Association. The translation is a first step to support the association’s efforts in providing accurate information about Down syndrome to pregnant women and families in Iceland.

Global and the National Down Syndrome Congress (NDSC) offered to provide the translation of their recently published Prenatal Testing & Information About Down Syndrome following a CBS news report in August about the termination rates of Down syndrome pregnancies in Iceland.

According to the report, “Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.” In actuality, from 2007 to 2015, nearly 85% of pregnant women opted for Down syndrome screening and, of those who received an amniocentesis resulting in a positive test result for Down syndrome, 100% terminated.

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 more than 95 percent of pregnant women don’t even elect to receive an amniocentesis.

“The high termination rates in Iceland are alarming,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “Every woman and every pregnancy is unique, but every woman should be given the facts including examples of how people with Down syndrome can and are contributing to society and reaching their potential. In the U.S. the situation is very different than Iceland – there is actually a population explosion of people with Down syndrome because of increased births and a more than doubling of the lifespan. Our problem is that funding for research and medical care has declined precipitously over the last two decades and we need to change that.”

“Global has been such a great partner to work with on our prenatal testing pamphlet and we are so pleased to offer it in Icelandic,” said David Tolleson, Executive Director of the NDSC. “The NDSC is offering scholarships to families from Iceland to attend our national convention in July of this year, and we believe it will serve as a great resource for people from Iceland to bring some best practices back to their country. We also look forward to learning from our colleagues in Iceland.”

“We appreciate Global and NDSC for extending support to the Down syndrome community in Iceland. Their generosity and moral support is very important for a small society as ours. And how wonderful to be part of this larger Down syndrome family, all sharing the same beliefs and hopes for people with Down syndrome,” said the Icelandic Down Syndrome Association President, Thordis Ingadóttir.

Watch C-Span cover the 5-minute testimony of Global Down Syndrome Foundation’s Quincy Jones Award Advocate, Frank Stephens, about Iceland and the future of people with Down syndrome.

Below are several trends associated with Down syndrome based on data in the United States:

• Population – ranges between 230,000-430,000
• Live Births – have increased to 1 in 691 today from 1 in 1,000 in 2002
• Lifespan –There have been great strides in medical care and lifespan has more than doubled to 60 years from 28 years in the 1980s
• Low Government Funding – Despite being the leading cause of developmental delay in the U.S. and the world, Down syndrome is one of the least funded genetic conditions by the National Institutes of Health (NIH) and has been since 2001.
• Education – By law, people with Down syndrome must be provided a free, appropriate education through their public school system.
• Societal Trends – A small but growing number of people with Down syndrome are choosing to live independently, participate in post-secondary education or college programs, and get married.

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

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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 to lead healthy and productive lives. To learn more, visit www.globaldownsyndrome.org.