Archive for January, 2018

Global’s New Headquarters featured on 9News & CBS

January 31st, 2018 by Global Down Syndrome Foundation

Dance the Night Away

January 29th, 2018 by Global Down Syndrome Foundation

Shane Beard wants everyone to feel the love through music — so much so that he even named his DJ business The Love DJ.

“I always knew I wanted to be a DJ, since I was 11 years old,” Beard said. “I started to look up things about the music I liked, and then my mom kept searching for classes to train me.”

The search paid off when Beard’s mom, Carla Ellis, discovered the Global DJ Academy* in Denver and Walt White, the man who became Beard’s mentor.

“It has meant so much to him to play music. He is so proud of himself and feels he has his own career path now, something he enjoys and is good at,” Ellis said. “What I like best about being a DJ is letting the people have a great time and watching them have fun and feel the love,” Beard said.

With a website and YouTube channel in the works, Beard strives to share his positive message and has lined up other DJ gigs, including one with his church. And if you want to know if it’s Beard behind the turntables, just look for his trademark hat.

“I always wear a fedora when I DJ,” he said. “It makes me feel special.” 

I Love You Dance Parties

Global Down Syndrome Foundation’s I Love You Dance Parties provide the perfect place for adults with Down syndrome to kick up their heels, lift their spirits, and raise awareness.

Whether a person has twinkle toes or two left feet, Global’s I Love You Dance Parties embrace everyone. Designed to provide a real-life, age-appropriate experience for adults with Down syndrome and their friends and families, the events deliver a wealth of benefits to the community — promoting independence, exercise, and social interaction.

“They help me to get out of the house and see my friends that I don’t always see,” said self-advocate Rachel Greenlaw.

SOCIAL NETWORKING — AND SELF-ADVOCATING

“This is a place where self-advocates can get out and get moving. They’re not sitting and watching TV, and most of our folks love music and dance,” said Dennis McGuire, Ph.D., Senior Consultant at Global and a behavioral expert with more than 30 years of experience in mental health and developmental disabilities. “Having something to look forward to, to go out and not be stuck at home where you’re more likely to be depressed or just not enthusiastic about life, is vitally important.”

Beth Burczyk has attended 12 dance parties so far and likes the mature, elegant bar atmosphere that includes the option to enjoy a single cocktail or a “mocktail.”

“It’s fun and adult,” Burczyk said. “Going makes me feel comfortable and confident that I can do things like this and that it’s OK.”

“The events are very positive and upscale,” added Burczyk’s mother, Laura. “Global provides a safe environment, and the dances are always fun.”

A generous grant from The Salah Foundation, which supports nonprofit organizations that strengthen families and communities, helps fund the events. Held quarterly in downtown Denver and hosted by a celebrity emcee, the parties have attracted as many as 150 people per event and help fill the striking social void that can develop after schooling ends.

The parties also present ample opportunity for adults with Down syndrome to advocate for themselves, for example, by coordinating their transportation, paying with money they’ve earned, or making sure they are served what they ordered.

“It gives Rachel a positive feeling of independence,” said Greenlaw’s mother, Diane. “Even though there are chaperones at the dances, the chaperones include themselves as friends and dance, too.”

For self-advocate and DJ Shane Beard, the dance parties turned into a chance to showcase his talent and love of music. After attending several events, he recently took to the turntables to entertain the crowd at both the 2016 Hollywood Ball and the December I Love You Dance Party.

“DJing the dance parties has helped me share with people the music that speaks to the heart and helps people feel special,” Beard said. “That makes me proud to see everyone happy.”

 


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

ONE NIGHT, A LASTING IMPACT

“The events are critical to their sense of self-worth, feeling included and excited about their journey as adults,” added Beard’s mom, Carla Ellis, who attends with him. “It’s pure joy, with loads of laughter. It’s always an experience for everyone — parents, caregivers, friends, self-advocates, all on the dance floor, just letting loose and having fun.”

The aim to keep participation balanced between self-advocates and the typical population ultimately serves a long-term goal of building strong friendships and relationships that change the way people perceive individuals with Down syndrome. Plus, having planned activities does more than simply fill an evening, according to Dr. McGuire.

“Our guys love schedules, and when they have one, all of a sudden they’re involved in the world, dancing, doing activities,” Dr. McGuire said. “They have a sense of control and participation in things. It changes their sense of themselves in so many positive ways.”


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Join our Dare to Ride Team at the 2019 Courage Classic

January 29th, 2018 by Global Down Syndrome Foundation


Join the Global Down Syndrome Foundation’s Dare to Ride Team for the 2019 Courage Classic bike tour today! The Courage Classic is a fundraiser for Children’s Hospital Colorado, and the Dare to Ride Team will be designating its funds to the Anna and John J. Sie Center for Down Syndrome at the hospital. Whether you are a recreational biker or a seasoned race pro, the Courage Classic has a course for you! Bike the 10-mile route on Saturday, the 160-mile full route over two days, or select one of the many options in between. All routes start at Copper Mountain Resort, 75 miles west of Denver in beautiful Summit County.

The details: spend July 20th & 21st in Copper Mountain!

For all race logistics, click here to visit the Courage Classic site.

Why should YOU ride with Global?

Here are some of the many perks of becoming a Global Rider:

  • Support Life-Saving Medical Care. Raise $50k to benefit the Sie Center for Down Syndrome, which is the fastest growing medical care center for individuals with Down syndrome.
  • Online Fundraising and Communication Tools. With Global, you’ll receive your own personal fundraising page that you can customize and share. Donors can show their support by making a gift online or by mailing a check.
  • Sense of Community. Any skill level is welcome to join! Routes range from
    a 10-mile family ride to a tougher 84-mile route, but group training rides will prepare you to tackle it all!
  • Supportive Staff. Our team is commited to supporting your fundraising goals, so don’t let the $500 minimum deter you. We will host meetings to check in and brainstorm ideas..
  • Team Swag & Celebration Party. For a low registration fee of $100 (before May 1st),
    you will provide life-saving and life-changing medical care to children with Down syndrome.
  • Get Started Changing Lives. Because there’s nothing like cool gear and a cold beer to make that last minute mile seem just a little less impossible.

Ready to sign up? It’s as easy as 1, 2, 3…

1. Register on the Dare to Ride Team page to ensure that all funds raised support the Sie Center.

2. Set up your personal fundraising page. After you register, you can set up your own personal fundraising page, complete with a photo, a personal message and more!

3. Wait for an email from Global. A Global staff member will reach out to you with information about the child you are riding for, and invitation to join our private team Facebook group and a fundraising toolkit to help you get started.

If you have any questions, please contact events@globaldownsyndrome.org or 720-548-5619.

Together we can reach our Dare to Ride Team goal of raising $50,000!

 

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In-Kind Sponsors

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

Frank Stephens at DC Hearing

January 19th, 2018 by Global Down Syndrome Foundation

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.

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.

Pizza, Pasta — And Purpose In Life

January 2nd, 2018 by Global Down Syndrome Foundation

The Sunflower Inn Near Rome Provides Jobs While Serving Up Favorite Italian Dishes With A Side Of Happiness.

In Italy, the sunflower represents happiness. So in 2000, when the parents of a teenager with Down syndrome opened a restaurant near Rome with the aim of employing people with the condition, they named it La Locanda dei Girasoli, or “The Sunflower Inn.” The idea was that people with Down syndrome are happy and would bring customers much happiness as well. The restaurant, the only one of its kind in Italy, quickly became a national phenomenon and garnered international press.

However, starting a business is not for the faint of heart. During an economic crisis in 2013, the owners were faced with the possibility of shutting down. Luckily, a social cooperative called Consorzio SINTESI was able to take over the restaurant and even expand its r each. Consorzio SINTESI specializes in giving jobs to people who are differently-abled and also manages call centers and tech support services for large companies.

People working at The Sunflower Inn have a work contract, and the goal is to employ them for the long-term. They are part of a network of people who are differently-abled whom the cooperative helps in many settings. For those interested and qualified to cook, there is a special program that allows them to learn f rom some of the top chefs in Italy.

BENEFITS OF A RIGOROUS CULINARY EDUCATION
Today, the restaurant’s staff includes eight people who are differently-abled, five of whom have Down syndrome. Of those five, two work as sous, or assistant, chefs.

Employees must be 18 years old, have Down syndrome or some other intellectual disability, be unemployed, have a lower secondary school diploma, and have receivedcertification for work eligibility from the Italian government.

All employees begin as interns and complete a combined 600 hours of orientation, classroom training, and practical experience, which makes up more than 400 of those hours.

All the positions at The Sunflower Inn, including internships, are paid. “These jobs provide some financial security and a sense of autonomy,” said Enzo Rimicci, President of Consorzio SINTESI. “All the employees work hard, are extremely professional and have great pride in their work. This has led to increased confidence, which in turn leads to other growth, such as improved language skills or the ability to take public transportation.”

The employees themselves agree. When asked what they like best about their jobs they reply, “Teamwork!” and, “It’s like a family!”

A MOVEABLE FEAST
The Sunflower Inn has many regulars, according to Rimicci, and it has earned a 4.5 rating on TripAdvisor, where glowing reviews have given it a reputation as being a place that locals and tourists alike enjoy visiting. For some international tourists, it has become somewhat of a mecca.

 

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

The restaurant and the cooperative don’t receive any state aid and have to be selffunding. Catering is their main source of revenue, with their primary work focused on private events, sporting events, and restaurant collaborations. They have also launched an anti-bullying campaign in schools.

Rimicci represents the energy for his community, “We never stop! We have not yet managed to realize the dream of opening a second restaurant in southern Italy. It’s a big economic investment for our pockets today, but we’re sure that will come true tomorrow!”

GLOBAL CHALLENGES, LOCAL SOLUTIONS
In Italy, as in the U.S. and other countries, people who are differently-abled struggle to find jobs or meaningful activities after their public school education.

Enzo Rimicci, president of social cooperative Consorzio SINTESI, believes that this situation is dangerous for the well-being of those who are differently-abled and for our society. In addition to creating employment opportunities for people with intellectual disabilities in restaurant and catering settings, Consorzio SINTESI also provides employees the opportunity to become self-advocates. For example, in 2015, Consorzio SINTESI established the Inclusive Schools program. The program has been embraced by the local community. It provides the restaurant employees the opportunity to co-present at schools where they emphasize anti-bullying and teach children respect for diverse abilities.

Visit lalocandadeigirasoli.it to learn more and for links to the restaurant’s Facebook page and YouTube channel, where you can learn their easy recipe for Cacio e Pepe (cheese and pepper pasta).


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!