Archive for November, 2017

Global’s historical hearing in Washington, D.C. soars to 150 million views

November 20th, 2017 by Global Down Syndrome Foundation

Global’s President & CEO highlights video of historic congressional hearing on Down syndrome research reaching over 150 million views

At the annual Be Beautiful Be Yourself Fashion Show, Michelle Sie Whitten encouraged Global’s 1,360 attendees to watch the C-Span coverage of the landmark congressional hearing and to support increased federal funding for research benefiting people with Down syndrome. 

 

  

 

Generous $1 million grant will help establish a much-needed education center at Global’s new international HQ in Denver 

Salah Foundation

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | (720) 280-9725
Anca Call | acall@globaldownsyndrome.org | (720) 320-3832

DENVER – The Global Down Syndrome Foundation (Global) today announced a transformative lead gift of $1 million from The Salah Foundation. Combined with the generous $1 million grant, Global will receive additional matching funds that will help to establish a center in Denver dedicated to educational activities primarily for people with Down syndrome but also for others who are differently-abled.

The gift was unveiled by Noreen Salah Burpee, executive director of The Salah Foundation, at Global’s annual record-breaking Be Beautiful Be Yourself Fashion Show held on Nov. 11, 2017, at the Sheraton Denver Downtown Hotel. The announcement brought a crowd of more than 1,300 including advocates with Down syndrome, their families, friends, supporters, and celebrities Quincy Jones, Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon and Eva Longoria to their feet.

“We are so grateful for The Salah Foundation and Noreen for making this generous and impactful gift to the Global Down Syndrome Foundation,” said John C. McGinley, award-winning actor and Global board member after hearing the announcement backstage at the fashion show. “The team at Global works hard and is truly delivering for the Down syndrome community. This will allow them to reach even more people.”

“We are thrilled to support the work of the Global Down Syndrome Foundation as they continue to create extraordinary change in the lives of people with Down syndrome and their families,” said Salah Burpee. “We hope that others will follow suit and open their hearts and wallets to this important project.”

The education center will be housed in Global’s new international headquarters in Denver in the Cherry Creek Shopping North – one of the most popular districts in Colorado with the fastest growing foot traffic. It is anticipated that the multi-use education center will provide cooking classes, computer labs and other center-based educational programs for varying ages and abilities and will open sometime in the second half of 2018.

Global supports the research of hundreds of scientists around the world and helped establish the first and only academic home for Down syndrome research at the Crnic Institute for Down Syndrome at the University of Colorado School of Medicine at the Anschutz Medical Campus, with a focus on Alzheimer’s disease, cancer, and autoimmune disorders.

Global funding also helps provide the highest quality of comprehensive medical care to thousands of children with Down syndrome from around the world through the Sie Center for Down Syndrome at Children’s Hospital Colorado, coordinating medical care, along with therapies including speech, physical and occupational therapy.

“We are grateful for the continued support of The Salah Foundation as we advance our mission,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Noreen, Fred, Megan and the whole Salah family have believed in our work, provided us guidance to expand, and now have given us this extraordinary gift that simultaneously increases our impact on people with Down syndrome and helps ensure my parents’ legacy. I can’t tell you how meaningful that is to us.”

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About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

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 remain 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, visit. www.globaldownsyndrome.org.

The sold-out star-studded event attracted over 1,300 attendees from 22 states and 10 countries

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | 720-280-9725
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

DENVER – The Global Down Syndrome Foundation raised a record $2.6 million for life-changing research and medical care at its 9th annual Be Beautiful Be Yourself Fashion Show held on Saturday, Nov. 11, 2017, at the Sheraton Downtown Denver.

Chaired by Peter Kudla, CEO of Metropolitan Homes Inc., the sold-out event attracted more than 1,300 attendees from 22 states and 10 countries. Music Icon Quincy Jones was on hand to present his namesake award, the “Q Exceptional Advocacy Award” to actress and activist Eva Longoria and to model phenom Madeline Stuart. The fashion show grand finale procession to Quincy Jones’ “We Are the World” brought the audience to its feet.

A roster of impressive celebrities and VIPs including Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon, Denis O’Hare, Amanda Booth and 2017 Ambassador Marcus Sikora made powerful contributions to the evening.

“This is the fourth year in a row that we have sold out,” said Global President and CEO Michelle Sie Whitten. “It is deeply gratifying to know that so many people care about the terrible lack of funding for Down syndrome research and medical care. Of course, our models with Down syndrome make the event so joyous and inspirational, it has become an annual destination for our families and supporters.”

Global’s Be Beautiful Be Yourself Fashion Show is the single largest fundraiser benefitting people with Down syndrome in the world. The money raised supports critical research conducted by the Crnic Institute for Down Syndrome on the Anschutz Medical Campus and life-saving medical care at the Sie Center for Down Syndrome at Children’s Hospital Colorado. This year’s proceeds add to the over $14 million already raised in the previous eight fashion shows held by Global Down Syndrome Foundation.

“Global’s research funding is already helping us make giant strides in exploring the unique disease spectrum affecting the population with Down syndrome,” said Dr. Joaquín Espinosa, executive director of the Crnic Institute. “We now know that Down syndrome can be understood in large measure as an immune system disorder, which opens the door to find new treatments and therapies, and allows us to better explore the connections that may help cure Alzheimer’s disease.”

Down syndrome is the leading cause of developmental delay and the population of people with the condition is increasing dramatically in the U.S. Yet over the last two decades Down syndrome has been one of the least funded genetic conditions by the federal government, specifically the National Institutes of Health.

Our amazing models were a hit at the 2017 Be Beautiful Be Yourself Fashion Show!

November 11th, 2017 by Global Down Syndrome Foundation

National Down Syndrome Adoption Network

November 6th, 2017 by Global Down Syndrome Foundation

All Children Deserve The Safety And Security Of A Loving Home.

In 1981, Robin and David Steele visited a children’s home in Cincinnati and fell in love with a little girl named Martha. After initially being told Martha was not available for adoption because she w as born with Down syndrome, the Steeles persisted — both adopting Martha and establishing the National Down Syndrome Adoption Network (NDSAN) so no other child with Down syndrome would ever be considered “unadoptable.”


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!

FOREVER HOMES
A program of the Down Syndrome Association of Greater Cincinnati (DSAGC), NDSAN is a free registry (not an adoption agency) that connects birth and adoptive families across the U.S. The Steeles — who eventually adopted four more children with Down syndrome and six other children who are differently-abled — recently stepped back from the organization but are still committed supporters. Since 2010, NDSAN has been under the capable leadership of Stephanie Thompson, who spent the previous 11 years working for DSAGC.

When birth parents call NDSAN, Thompson answers their questions and provides educational resources about raising children with Down syndrome to help allay any fears that might accompany the diagnosis. If they decide to give a child up for adoption, she helps them develop a birth plan.

Families interested in adopting a child with Down syndrome can contact NDSAN after completing a home study. Thompson then searches NDSAN’s database for children who might be a good fit. Children with Down syndrome often have unique medical and developmental needs, and it is important that the family be a good fit for the child and vice versa. Thompson also helps get an adoption agency involved, if necessary, and continues to provide support after a child joins his or her new family.

“I can empathize with both adoptive and birth parents,” said Thompson, who has a 25-year-old son with Down syndrome. “I know how it feels to get a diagnosis of Down syndrome, and through that connection, birth parents feel comfortable asking me questions. If they want to make an adoption plan, I have a wonderful relationship with all of the adoptive families on our registry, whom I’m helping as well. It means the world to me these folks feel called to adopt a child with Down syndrome.”

“When we first learned of our son’s condition, we felt that there was little choice for us,” one family wrote in a letter to Thompson. “We may have made a very different decision if it w as not for your organization.”

EDUCATION AND OUTREACH

Thompson wants everyone involved in the adoption process to have the most up-to-date information about Down syndrome, and that includes medical professionals. NDSAN publishes booklets for healthcare providers so they can educate patients about all their options.

“If termination is talked about, we want adoption talked about as well,” she said.

She’s also reaching out to Down syndrome organizations that can help spread the word to members about both adoption and the many foster children with Down syndrome in their areas looking for forever homes.

“This can be a very emotional job,” Thompson said.

“But I can’t imagine doing anything else.”

Each year, the National Down Syndrome Adoption Network is contacted by approximately 125 expectant families, birth families, and agencies and helps 40 children find their adoptive families.

The article was published in Down Syndrome World™ magazine. Become a member to read the whole magazine and get future magazines delivered to your door!


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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