Leona Lewis: Abortion of Babies Down Syndrome ‘Hurts My Heart’

by Lauretta Brown from CNS News:
(CNSNews.com) – Upon learning that 90% of babies diagnosed with Down Syndrome are aborted, singer/songwriter Leona Lewis said it was “incredibly sad” and “hurts my heart a bit.”
Lewis, a Brit who shot to fame and a successful musical career after winning the X Factor in 2006, made her remarks on Wednesday at the Global Down Syndrome Foundation Gala at the Renaissance Mayflower Hotel in Washington, D.C.
At the event, CNSNews.com asked Lewis,  “What do you think of the statistic that nine out of ten babies diagnosed with Down Syndrome are aborted?”
Lewis said, “I think that’s so sad. I think that’s incredibly, incredibly sad and, yeah, it hurts my heart a bit.”
The high rate of abortion after a diagnosis of Down Syndrome was reported in the New York Times as early as 2007 and has been confirmed by several different studies.
“About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion,” reported The Times.

Stafford student to walk the runway at fashion show

from The Stafford County Sun:
Jose Louis Moreno-Capuzano of Stafford is a model at the Global Down Syndrome Foundation’s Fashion Show on May 7 in Washington, D.C.The show is a fundraiser that features more than 19 models with Down syndrome— including Jose, a first-grader at Margaret Brent Elementary School.He is the son of Jose L. Moreno and Maria G. Campuzano, of Stafford County. He has two brothers, Sahid and Jesus. He is the oldest son, and like his brothers, he was born with Down syndrome.
Jose loves music, playing with his brothers, watching cartoons, playing in the park and attending school, according to organizers.

Samantha Stevens takes to the runway

by Steph Hiltz from The Boston Globe:

When Michelle Sie Whitten established the Global Down Syndrome Foundation five years ago, her mission was to give a face to those within the community. And there’s hardly a more glamorous way to move into the spotlight than to don beautiful clothes and take to the catwalk. Of course, including a bevy of famous friends doesn’t hurt either.

“As a philanthropist, I go to a lot of charity events and [notice that] the people that are being served are often invisible,” Whitten said. She went on to create what has become the largest fund-raiser for Down syndrome in the nation, the annual Be Beautiful Be Yourself Fashion Show.

Video! At the Global Down Syndrome Foundation ‘Be Beautiful, Be Yourself Fashion Show’

from Extra:
Hollywood’s A-listers teamed with nearly 20 models with Down syndrome at the Global Down Syndrome Foundation (Global) “Be Beautiful, Be Yourself Fashion Show,” a high-style fashion show and fundraiser which took place in Denver on Saturday, September 28.

The event featured celebrities including Jamie Foxx, John McGinley and Quincy Jones, who are helping raise money and awareness of the condition.

Take a look!



The gala honored HLN’s Kyra Phillips and businessman/social media phenom Tim Harris, who has Down syndrome. They received the Quincy Jones Exceptional Advocacy Award for their support of those with disabilities, and for raising awareness about the social inequities that still exist.

Global Down Syndrome Foundation Launches National Research & Medical Care Roundtable, Highlights 21 Pre-Eminent Experts in One "Phenomenal" Day

from The Global Down Syndrome Foundation:
The Global Down Syndrome Foundation held its inaugural national Research & Medical Care Roundtable on July 18, attracting top scientists and researchers focused on Down syndrome. The experts presented their work and answered questions for over 400 attendees, approximately 80 percent being self-advocates and family members, and 20 percent professionals.

The Global Roundtable was a full day of cutting-edge research and best-practices medical care organized into five parts: an NIH Keynote and four panels focused on Medical Care, Prenatal Testing, Basic Research, and Down Syndrome & Alzheimer's Disease. Each panel had five experts representing both research and medical care. Expert presenters included Dr. Fran Hickey, Dr. Peggy Kelley, Dennis McGuire, Ph.D., Dr. George Capone, Dr. Peter Bulova, Michelle Sie Whitten, Sue Joe, Dan Ketcherside, Dr. Kelly Lennon, Alberto Gutierrez, Ph.D., self-advocate and Global Ambassador DeOndra Dixon, Yvonne Maddox, Ph.D., Roger Reeves, Ph.D., Katheleen Gardiner, Ph.D., Dr. William Mobley, Ph.D., John Crispino, Ph.D., Tom Blumenthal, Ph.D., Dr. Ira Lott, Jorge Busciglio, Ph.D., Dean Hartley, Ph.D., and Huntington Potter, Ph.D.

"The Global Roundtable was -- in a word -- phenomenal," said Cyndi Johnson of Down Syndrome Family Connection in Bloomington, Ind. "I came as the sole representative of a small Down syndrome group with hopes to gather information to take back and share with other families. While that certainly happened, what really caught me by surprise was that I gained information that gave me a plan of action for some of the chronic medical concerns my own daughter is facing. I have a renewed sense of purpose with my daughter's physical and mental health at the center. The panelists were a wealth of knowledge combined with experience, wisdom and care that was positively energizing."

GDSF Roundtable & NDSC Convention Schedule Thursday, July 18, 2013

This is a summary of events for Thursday, July 18, 2013 at the NDSC Annual Convention in Denver, CO featuring the Global Down Syndrome Foundation Research & Medical Care Roundtable.

7:00AM - 8:00AM Buses from Hyatt Regency Denver at Colorado Convention Center to Children’s Hospital Colorado (you must be registered)

8:00AM - 5:00PM Global Down Syndrome Foundation (GDSF) Research & Medical Care Roundtable at The Sie Center for Down Syndrome at Children’s Hospital Colorado,13123 E 16th Avenue, Aurora, CO 80045, Rooms: Mt. Princeton, Mt. Yale, and Oxford
8:00AM - 9:00AM Check-in, Continental Breakfast
9:00AM Welcome
9:15AM Medical Care Panel
10:50AM Break - Refreshments
11:05AM Prenatal Testing Update
12:00PM Lunch & Presentations - Boxed Lunches and Refreshments
1:00PM Basic Research Panel
2:35PM Break - Refreshments
2:50PM Down Syndrome-Alzheimer's Disease Panel
4:25PM Break
4:40PM Tour of the Sie Center for Down Syndrome at Children’s Hospital CO; Buses back to Hyatt Regency Denver at Colorado Convention Center

6:00PM - 9:00PM NDSC Convention Registration Open
7:00PM - 8:30PM First Time NDSC Convention Attendee Orientation
7:00PM - 8:30PM NDSC Convention Diversity Networking Social

7:30PM Colbie Caillat, Paramount Theatre for Musical Performance - Note: Performance is by invitation only. Registered participants of the Global Research & Medical Roundtable are automatically provided a non-transferrable ticket. Performance location is two blocks from the Hyatt Regency Denver at Colorado Convention Center, therefore no transportation is provided

NDSC Convention Agenda Summary
NDSC Convention Home Page

Thursday 7/18 GDSF Research & Medical Care Roundtable Schedule

The Global Down Syndrome Foundation is proud to announce the Global Down Syndrome Foundation Research & Medical Care Roundtable at the Children’s Hospital Colorado on Thursday, July 18, 2013.

The Global Roundtable, held at one of the nation’s top ten children’s hospitals and home to the Sie Center for Down Syndrome, is co-organized with the National Down Syndrome Congress and supported by the Down Syndrome Medical Interest Group. The Global Roundtable will feature nationally renowned scientists and medical professionals working to better the lives of people with Down syndrome. Topics will include sleep apnea, immune deficiency, leukemia, prenatal testing, cognition, and Alzheimer’s disease.
The morning of the Global Roundtable, bus transportation will be provided to and from the convention’s designated hotel, the Hyatt Regency Denver at Colorado Convention Center to the Children’s Hospital Colorado, departing from 7:00am. Breakfast, snacks and lunch will be provided during the Global Roundtable.
To make it even more exciting, we are also offering each Global Roundtable attendee a ticket to a private performance by Colbie Caillat at 7:30pm at the Paramount Theatre – just two blocks from the Hyatt Regency Denver at Colorado Convention Center.

• In order to participate in the Global Roundtable and to attend the invitation-only Colbie Caillat concert you must first register for the National Down Syndrome Congress Annual Convention in Denver from July 19-21st, and then register for the roundtable and concert. To be clear, there is no additional cost for the roundtable and concert beyond the convention registration fee.

Early-bird registration for the convention has ended but Global’s Christian Ransom Ball Scholarship Fund is offering a limited number of $50 scholarships on a first come first serve basis.


Key Locations
Hyatt Regency Denver at Colorado Convention Center
650 15th Street, Denver, CO 80202
Sie Center for Down Syndrome at Children’s Hospital Colorado
13123 E 16th Avenue, Aurora, CO 80045
Rooms: Mt. Princeton, Mt. Yale, and Oxford
8:00 am — 5:00 pmParamount Theatre
1621 Glenarm Place, Denver, CO 80202
7:30 pm — 9:30 pm

Detailed Schedule of Events

• 7:00 — 8:00 am Buses from Hyatt Regency Denver at Colorado Convention Center to Children’s Hospital Colorado
• 8:00 — 9:00 am Check-in, Continental Breakfast
• 9:00 am Welcome Remarks
• 9:15 am Medical Care Panel
• 10:50 am BREAK – Refreshments
• 11:05 am Prenatal Testing Update
• 12:10 pm Lunch Presentations – Boxed Lunches and Refreshments
• 1:00 pm Basic Research Panel
• 2:35 pm BREAK – Refreshments
• 2:50 pm Down Syndrome-Alzheimer’s Disease Panel
• 4:25 pm BREAK – Tickets for Colbie Caillat Will Be Provided
• 4:40 pm Tour of the Sie Center for Down Syndrome at Children’s Hospital CO & Buses back to Hyatt Regency Denver at Colorado Convention Center

7:30 pm Paramount Theatre for Musical Performance

Understanding the Basics of Down Syndrome Research - and how you can help

D.A.D.S. Webinar: 

Understanding the Basics of Down Syndrome Research - and how you can help

Tuesday, July 9, 2013 7:00 PM - 8:30 PM EDT

We know what it means to have a person with Down syndrome in our lives, but what does it mean to have Down syndrome? Even though we're aware of the definition - three copies of chromosome 21 instead of two - there's a lot still to learn about why this "triplication" occurs.

What kind of therapies, medications or strategies may be on the horizon to help improve the lives of people with Down syndrome? Whether it's cognitive delay or one of the many other conditions or diseases that our kids are prone to, what are the hopes for how research can help, and what can we as dads do to help?

Join D.A.D.S. and the Global Down Syndrome Foundation as we cut through the complexity of the science to show what's going on in the world of Down syndrome research and how it can affect your family.

This informative webinar will feature two leading scientists from the Linda Crnic Institute for Down Syndrome:

Tom Blumenthal, Ph.D.  

Executive Director

Huntington Potter, Ph.D.  

Director of Alzheimer's Research

Blumenthal and Potter will discuss what research is going on, what research is possible and what it all means to you. There will be time for questions and answers, so don't worry about any information going over your head.

Sign up for you or your D.A.D.S. group now by going to https://www1.gotomeeting.com/register/794287609

There's no charge, and we hope you can join us for what's sure to be an enlightening and informative evening. So don't wait - sign up today, and we'll see you on July 9!

Free Webinar: Understanding Down Syndrome Research and How You Can Help

Global Down Syndrome Foundation and D.A.D.S Webinar: Understanding Down Syndrome Research and How You Can Help

On Tuesday, July 9, 2013, 5 p.m. MST, the Global Down Syndrome Foundation and D.A.D.S. (Dads Appreciating Down Syndrome) are co-organizing an exciting webinar – "Understanding the Basics of Down Syndrome Research and How You Can Help." The webinar will feature two of our nationally renowned scientists from the Linda Crnic Institute for Down Syndrome, Executive Director Dr. Tom Blumenthal, and Director of Alzheimer's Research Dr. Huntington Potter. They will present an overview of current, important research aimed at benefitting people with Down syndrome. Tom Blumenthal, Ph.D. Executive Director Huntington Potter, Ph.D. Director of Alzheimer’s Research From sleep apnea to autoimmune diseases to Alzheimer’s disease, this webinar will highlight the medical and cognitive challenges people with Down syndrome face and how research may hold the key. Their presentations will also address how you can help given the disparity of research funding that currently exists for people with Down syndrome. Time will be provided for questions and answers. Register for this important webinar now. If you have a family member or dear friend with Down syndrome, if you are interested in research affecting people with Alzheimer’s or cognitive delay, this webinar is for you. There’s no charge, and we hope you can join us for an enlightening and informative evening. Gratefully, Michelle Sie Whitten Executive Director, Global Down Syndrome Foundation

Connect with the Global Down Syndrome Foundation online:

www.globaldownsyndrome.org www.BeBeautifulBeYourself.org

Supermodel spotlights Down syndrome

by Patrick Gavin from Politico:
Supermodel Beverly Johnson is in town this week to raise awareness of Down syndrome in her role as an international spokeswoman for the Global Down Syndrome Foundation, and she wants one thing in particular out of Washington: more money.
“It’s one of the least funded disorders,” Johnson told POLITICO. “There’s just a lot of research that needs to be done, and we need dollars to do it.”
Johnson did her part to raise money for the cause at The Ritz-Carlton in Washington on Wednesday, where she appeared at the Global Down Syndrome Foundation Gala & Fashion Show, featuring Sheryl Crow and Quincy Jones. Reps. Cathy McMorris Rodgers and Chris Van Hollen also were honored with the Quincy Jones Exceptional Advocacy Award for their support of individuals with Down syndrome.
In promotional material for the event, the foundation stated “that Down syndrome is the most frequent chromosomal condition affecting an estimated 400,000 Americans, but is the least funded genetic condition by the National Institutes of Health [NIH], securing only 0.0007 percent of NIH’s 2012 $31 billion budget.”
Johnson, however, is optimistic that Washington can take action on improving the situation.
“We just really want to shine that spotlight and get people to write those checks and to also make Congress aware of the funding that we need for this very serious issue,” Johnson said. “I am very optimistic. I believe in people, and I believe in Congress. … I know that this is something that should be very high on the list and it’s just something that we haven’t made the effort and now we’re making the effort.”
Johnson rose to fame in the 1970s when she became the first African-American woman to grace the cover of Vogue. Given her expertise, we had her weigh in on Washington’s reputation as being “Hollywood for ugly people.”
Johnson treated the District kindly.
“I love D.C.,” she said. “You’re gorgeous.”

GDSF's Be Beautiful Be Yourself Gala in Washington DC!

May 8, 2013 – Save the Date for the Global Down Syndrome Foundation’s
Be Beautiful Be Yourself Gala in Washington, DC!

Join us May 8 to celebrate our models with Down syndrome, 2013 Ambassador Cole McMorris Rodgers, and Quincy Jones Exceptional Advocacy Award recipient U.S. Rep. Cathy McMorris Rodgers. More details about the event and registration information are coming soon! For more information, contact Jessica Karlsruher at 703-683-7500 or jkarlsruher@epiphanyproductions.com.
Auditions for the models will be Friday, March 15, at the George Washington University in Washington, DC. Registration for the auditions is open now!

Parents of kids with Down syndrome following US researcher’s ‘memory drug’

by Karl Stagno-Navarra from Malta Today:

Despite the still embryonic stages of the drug, a number of parents from all over the world – including Malta – have contacted this doctor asking whether they should give their children the drug.

A number of Maltese parents of children affected by Down Syndrome, have reportedly been in contact with Alberto Costa, a Brazilian-born associate professor of medicine and neuroscience at the University of Colorado-Denver Anschutz Medical Campus, who has recently discovered a drug might help the memory of people with the condition.

The breakthrough drug called 'memantine' has so far produced what has been described as "cautiously encouraging results".

Despite the still embryonic stages of the drug, a number of parents from all over the world - including Malta - have contacted Costa asking whether they should give their children the drug.

He says no. It's still an experimental drug whose long-term effects are unknown. "Hence, please don't try it," he tells them.

During Costa's clinical experiment, young men and women with Down Syndrome were administered for 16 weeks with memantine, which is normally used by Alzheimer patients to improve their memory.

The subjects showed statistically significant improvements in one of five key memory tests compared with others who took placebos.

Its outcome was not substantial, but enough to draw attention from the Down Syndrome community around the world, following the publication of a lengthy profile of Costa in The New York Times, who is now searching for funds in order for him to broaden his research.

Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation, which has helped fund Costa's research for the past six years, said Costa made a crucial link between Alzheimer's and Down syndrome that will affect future research.

"No one, including Alberto, is jumping up and down" over the results of the clinical trial, she said, "but it showed us much more information than we had before".

Global Down Syndrome benefit is expanding

by Joanne Davidson from The Denver Post:
Let's take a good thing and make it even better seems to be the catchphrase for the 2012 Be Beautiful Be Yourself Fashion Show. The Oct. 13 benefit for the Global Down Syndrome Foundation has a new location, several great additions to the committee and a new element best described as "timely."

At a cocktail reception held at the Lawrence Covell boutique in Cherry Creek North last week, chairwoman Nancy Sevo announced that special guests will include music icon Quincy Jones; Academy Award-winning actor Jamie Foxx and his sister, foundation ambassador DeOndra Dixon; and actor Luke Zimmerman, whose credits include "Secret Life of the American Teenager."

The goal, she added, is to raise $1.75 million. "I know that's aggressive," Sevo said, but thanks in large part to the efforts of corporate sponsor chair Shane Phillips, $900,000 is already in hand.

Sevo also reminded the 200 guests that the event is moving to the Sheraton Denver Downtown and that a new silent auction category has been added. "It's Time" will be a collection of vintage, designer and other new or lovingly cared-for watches and clocks. Have a donation? Call Martha Cronen, 303-468-6667.

The event is also welcoming support from Annabel Bowlen, wife of Denver Broncos owner Pat Bowlen, and several of the women who had volunteered with her on behalf of Beacon Youth and Family Center's Cherish the Children Guild. Beacon Center, which had provided mental health services for 42 years, closed in March 2011.

Bowlen is chairing Be Beautiful Be Yourself's live auction. Other former Beacon supporters with leadership roles include Kay Burke (silent auction); Debra McKenney (tickets); Judi Wolf (program and talent); Nicole Gampp (gift bags) and Judianne Atencio (public relations). Former guild members Marilyn Spinner, Lydell Peterson and Edna Chang-Grant also are on the committee and Quinn Washington is coordinating participation by young professionals.

Guests at the kickoff also enjoyed hors d'oeuvres from Catering by Design, informal modeling and a runway segment that had children with Down syndrome appearing in clothes from Little Me's and professional models showing fall styles by designers carried by Lawrence Covell: Brunello Cucinelli, Jean Paul Knott, Chris Benz and Caruso.

Sevo said that in keeping with tradition, there will be a fashion show at Be Beautiful Be Yourself. The stars will be children with Down syndrome escorted by professional athletes and the visiting celebrities. What's different is that unlike in the three previous years, there is no fashion sponsor for the adult models. They will be wearing their own clothes.

Also attending the kickoff were Cookie Gold with daughter and son-in-law Ricki and David Rest; Susan Karsh; Cindy Farber; Sunny Brownstein; Maureen Cannon; Josh Hanfling; Michael and Shereen Pollak; Arlene Hirschfeld; Ellen Wiss; Rosie Painter; Lyn Schaffer; David and Kasia MacLeod; Betsy Martin and fiance Kevin Marr; and Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation.

Tickets, starting at $500, can be purchased by calling Diana Moore, 303-468-6663.

Read more: Davidson: Global Down Syndrome benefit is expanding - The Denver Post http://www.denverpost.com/lifestyles/ci_21429919/global-down-syndrome-benefit-is-expanding#ixzz259AxAx63

NDSC Convention Schedule for Thursday 7/19

Thursday's Itinerary for the NDSC Convention in Washington, DC.

There are 2 main events planned for today.

NDSC Day on the Hill

In this important election year, WE are making a difference — more than 400 people have registered to be part of what’s expected to be the largest advocacy effort ever in our nation’s capital focused specifically on Down syndrome. Participants will have the opportunity to influence public policy that affects people with Down syndrome and their families. The day will start with meeting in the Capitol where we will be recognized by Congress and then advocates will continue on to their individual state meetings with Congress members to support the following legislative priorities.

• Cosponsor the Trisomy 21 Research Centers of Excellence Act (H.R. 2695/S.1840) and the Trisomy 21 Research Resource Act (H.R. 2696/S.1841).
• Cosponsor the Keeping All Students Safe Act (H.R. 1381/S. 2020).
• Cosponsor the Transition toward Excellence, Achievement and Mobility legislation in the U.S. House of Representatives (including the TEAM-Education Act, H.R. 602; TEAM- Empowerment Act, H.R. 603; and TEAM-Employment Act, H.R. 604) and consider championing the introduction of a companion legislative package in the U.S. Senate.
• Cosponsor the Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S. 1872) to ensure the creation of tax-advantaged savings vehicles for individuals with disabilities.

Global Down Syndrome Foundation's Be Beautiful Be Yourself Gala

• Featuring Dr. Huntington Potter Director of Alzheimer Disease Research, Department of Neurology & the Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine
• Be Beautiful Be Yourself Fashion Preview featuring models with Down syndrome
• Attendence from members of Congress supporting people with Down syndrome
• Performances by Scott Grimes and Bob Guiney
• This is at a different location than the NDSC Convention

Also, NDSC Convention Registration opens 7-9 PM

See the NDSC Convention website for all official details.

Actors Scott Grimes and Bob Guiney to Perform at GDSF's Fashion Show, Featuring Models with Down Syndrome

     

SOURCE: Global Down Syndrome Foundation (GDSF)


WHAT
Models with Down syndrome--escorted by members of Congress--will star in the Global Down Syndrome Foundation's (GDSF) Be Beautiful Be Yourself Fashion Preview, a fundraiser designed to raise awareness about the chromosomal disorder affecting one in 691 babies. This high-style evening also features a musical performance by Hollywood actors Scott Grimes and Bob Guiney and fashions from Robcyns Children's Clothes and Accessories.


WHEN
July 19, 2012, 6:30-8:30pm


WHERE
Sewall-Belmont House 144 Constitution Avenue, NE, DC


WHO
-- Models with Down syndrome, including GDSF Ambassador (and Jamie Foxx's sister) DeOndra Dixon, accompanied by four members of Congress and actors Bob Guiney (The Bachelor) and Scott Grimes (ER)
-- Celebrity musical act: Scott Grimes and Bob Guiney, who perform with Band from TV, a group of television actors who donate their performance proceeds to charities
-- Dr. Huntington Potter, newly appointed Director of Alzheimer Disease Research, Department of Neurology and the Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine
-- Members of Congress including the Honorable: John Barrow, Ann Marie Buerkle, Michael Burgess, John Carney, Bill Cassidy, Geoff Davis, Diana DeGette, Cory Gardner, Cathy McMorris Rodgers, Ed Perlmutter, Jared Polis, Scott Rigell, Pete Sessions, Scott Tipton, and Chris Van Hollen


WHY
Down syndrome is the most frequent chromosomal disorder affecting an estimated 400,000 Americans, but is the least funded genetic condition by the National Institutes of Health (NIH), securing a mere 0.0007 percent of NIH's 2011 $31 billion budget. GDSF is focused on raising funds and educating the public and leaders about the discrepancy in research funding for the disorder as well as the abilities and achievements of those with the condition.


HOW
Tickets start at $150 for people who have a family member with Down syndrome and $250 for general public admission and can be purchased at http://www.globaldownsyndrome.org/ or by calling 703-683-7500.


CONTACT
To cover the event, please contact Shawn Flaherty at 703-544-3609.

Cable TV pioneer Dr. John C. Malone makes impactful donation to the Global Down Syndrome Foundation

from the Global Down Syndrome Foundation:

Cable TV pioneer and Chairman of Liberty Media Corporation, Dr. John C. Malone, announced a $100,000 gift to the Global Down Syndrome Foundation to benefit the organization’s marquee annual benefit, the Be Beautiful Be Yourself Fashion Show.

The fundraiser will be held at the Sheraton Downtown Denver on Saturday, October 13, 2012 with celebrity and self-advocates such as dancer DeOndra Dixon, actor Luke Zimmerman, Music Icon Quincy Jones and Academy and Grammy Award-winner Jamie Foxx.

The Global Down Syndrome Foundation’s annual marquee event is equal part awareness-building and fundraising for the Linda Crnic Institute for Down Syndrome. The Be Beautiful Be Yourself Fashion Show is the largest single fundraiser for Down syndrome in the United States. At the heart of the event is the reality that Down syndrome is the least-funded genetic condition by the National Institutes of Health. 

After welcoming a granddaughter with Down syndrome into his family, John J. Sie, another cable TV pioneer who worked for Dr. Malone for more than 20 years, helped to launch the Crnic Institute and the Global Down Syndrome Foundation.

Dr. Malone commended his longtime friend and colleague, John J. Sie, for his approach to stimulating research and medical care benefitting people with Down syndrome. “I’ve known Johnny for a long time now. When he sets his mind to something he will get it done,” said Dr. Malone. “That’s good news for people with Down syndrome and their families – the research Johnny is underwriting is exciting and promising. I’m glad I can help.”

“This gift means a great deal to me, my family and of course the millions of people with Down syndrome who deserve more research funding and better medical care,” said John J. Sie, board member of the Crnic Institute. “We so appreciate John and Leslie’s generosity and friendship.”

Dr. Malone is Chairman of Liberty Media Corporation, a position he has held since 1990. He is also the Chairman of the Board of Liberty Global, Inc. (LGI), a position he has held since June, 2005. From 1996 to March 1999 when Tele-Communications, Inc., (TCI) merged with AT&T Corp., Dr. Malone was also Chairman and Chief Executive Officer of TCI. Previously, from 1973 to 1996, Dr. Malone served as President and CEO of TCI. He currently serves on the Board of Directors for CATO Institute, Expedia, Inc., Discovery Communications, Inc., and SiriusXM. Additionally, Dr. Malone is Chairman Emeritus of the Board for Cable Television Laboratories, Inc. as well as Director or similar capacity for various family businesses, Trusts or Foundations.

John J. Sie is founder and former Chairman of Starz Entertainment Group LLC. Founded in 1991, the Colorado-based company is owned by Liberty Media Corporation and is the parent of premium movie networks, including Starz and Encore.  Sie is considered by many to be the father of digital television – in 1989 he submitted the very first white paper on digital compression to Congress and the FCC that would dramatically change the landscape of television in the United States and the world. In 2005, Sie retired and with his wife Anna established the Anna and John J. Sie Foundation. The Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with emphasis on Down syndrome, education, media, business, and technology.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at the Children’s Hospital Colorado. It partners both locally and globally to provide life-changing research and medical care for individuals with Down syndrome. The Crnic Institute is made possible by the generous support of the Anna and John J. Sie Foundation, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness and government advocacy. It is a research and medical-based organization without political or religious affiliation or intention.

About the Global Down Syndrome FoundationThe Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.  Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the US committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show - the single largest annual fundraiser benefitting people with Down syndrome. Programmatically the Foundation organizes and funds many programs and conferences including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

Football and Cheer Camp with the Denver Broncos

from Our Colorado News by Ryan Boldrey:

All the excitement surrounding the Broncos this offseason no doubt has to do with Peyton Manning.

Yet another longtime veteran of the game, Jack Del Rio, is already making a difference in his new community. The squad’s new defensive coordinator, along with the recently retired all-pro Brian Dawkins, spent the morning of June 23 coaching a pair of teams comprised of children with Down syndrome to an 18-18 tie at Valor Christian High School in Highlands Ranch.The third annual event at Valor was once again organized by former Broncos standout Ed McCaffrey, whose sons Christian and Max both starred on the gridiron this past year for the Eagles. The three-time Super Bowl champion receiver teamed up with the Global Down Syndrome Foundation for the event, giving those with the disorder a chance to shine and have some fun.
The game is the pinnacle of a two-day camp to give those with Down syndrome an opportunity to learn and play the game of football, while working with the former Broncos and a state-championship high school football team.
“Ed (McCaffrey) and I got together and we gave the (kids) a buddy that would be with them every day, take them through it, and get a good close relationship,” said Valor head coach Brent Vieselmeyer, who has watched the program grow each year. “Their buddy would help them out, get them lined up and then they would play.
“It was a great opportunity for our kids from just a Valor perspective of we really get to see kids being unselfish. You hear so many terrible things about this generation and here you’ve got kids that are trying to be something more than just themselves. It’s a pretty neat experience. It’s a blessing for them and frankly, for our team it’s the most fun they have, this event, all summer.”
The day featured everything from skydivers to the Denver Broncos cheerleaders, mascots Thunder and Miles, the Mile High Tumblers and Drumline and a celebration party afterward that featured a bouncy house, face painting and more.
“Coming out here, having these games, and just playing football period it makes their day every time they come out here,” said Gabriel Watkins, one of the buddies and a Valor sophomore who plays both linebacker and fullback for the Eagles. “It’s a lot of energy and a lot of work, but it’s great to see them happy.
“It feels good on the inside to let you know not only is our school getting things done like we said we would, but that I did something to help, and now I feel good because I actually did something positive not just for myself but for countless other kids.”
Not just for boys and young men, the Broncos cheerleaders also put on a halftime show with some young cheerleaders who have Down syndrome.
“While we held just a couple practices before the camp, the cheerleaders worked with the girls for over a month,” Vieselmeyer said.

Program offers football, cheerleading for kids with Down syndrome

By Pamela Wood - Capital Gazette:

Stephen Nowak dreams big: He wants to be the quarterback of the Baltimore Ravens.The 19-year-old from Churchton, who has Down syndrome, came pretty close to living his dream Saturday, playing football on the artificial turf of Navy-Marine Corps Memorial Stadium.“This is as good as it gets,” said Stephen’s mom, Marla. “This is a lifetime memory.”
Stephen was among several dozen young people with Down syndrome who got a chance to play football and cheer on the sidelines through a two-day camp sponsored by the Global Down Syndrome Foundation. The event was a first for Annapolis.
On Friday, the players and cheerleaders learned fundamentals. Then, on Saturday, they got to participate in a game, complete with a professional announcer, scoreboard highlights and celebrity coaches.
Stephen, who wore a white No. 7 jersey for the Dragons, said his favorite part of the game was “getting the touchdown.”
His little sister Lila, 14, was the only girl on the football field, wearing 22 for the Dragons. She said the best part was running.
The Nowaks’ team, the Dragons, was coached by Mike Shanahan, coach of the Washington Redskins.
Across the field in blue were the Honey Badgers, coached by former Baltimore Ravens coach and current TV analyst Brian Billick.
In the end, the teams tied, 35-35.
Down syndrome is a genetic condition caused by an extra chromosome. Individuals affected have mild cognitive delays and physical characteristics that include slanted eyes and a flattened nose.
The Global Down Syndrome Foundation, which is based in Colorado, had previously teamed up with former Denver Broncos wide receiver Ed McCaffrey for Dare to Play football and Dare to Cheer cheerleading events out west.
McCaffrey enlisted the help of Shanahan, who coached him in Denver, and Billick, who coached him in college at Stanford University, to put on the Annapolis program.
“This is one of the biggest blessings I’ve ever had in my life,” McCaffrey told the crowd. “We’ve had so much fun doing it in Colorado. We’re so happy to be in Annapolis to do our first one here.”
Billick hopes Dare to Play and Dare to Cheer becomes an annual event in Annapolis.
“This is the first time I’ve been a part of this, and I plan on doing it going forward,” said Billick, who lives on the Eastern Shore. “Hopefully we can build this event to a larger event here in Annapolis.”
The football players were teamed up with players from the Naval Academy, who guided them on the field. Boys from the Severn School in Severna Park shouted encouragement from the sidelines.
Navy seniors Matt Shibata of Hawaii and Jerad Fehr of Utah said they were inspired by the passion of the young players.
“These kids love the game — shoot, maybe more than we do,” said Fehr, a safety.
Shibata said working with children with developmental disabilities reminds him to be grateful for the abilities he has.
“You learn to appreciate the things you have,” said Shibata, a wide receiver.
The game was kind of managed chaos, but a happy chaos. The players ranged from pipsqueaks too small for their jerseys to teens who could run fast and throw some juke moves to evade defenders.
There were as many coaches and volunteers on the field as players.
Narrating the action was Chris Russell, a Redskins radio personality on ESPN 980 AM. His 10-year-old son Tyler has Down syndrome.
Russell roamed the field, calling the action over the public address system. A video crew taped the event and played highlights on the end zone scoreboards.
In front of the stands, the cheerleaders wore navy and orange uniforms and waved white pompoms with the help of professional cheerleaders for the Denver Broncos and Washington Redskins.
Greg and Lisa Custer of Arnold beamed as they watched their 17-year-old daughter, Valerie, perform with the cheerleaders.
Valerie, who attends Broadneck High School, cheers with a special-needs squad sponsored by the Maryland Twisters club. But that’s a competition squad that doesn’t cheer at sports events.
“Just to give her a chance to be a real cheerleader on the field, to work with professional cheerleaders — it’s a once-in-a-lifetime opportunity,” Lisa Custer said.
Cathy Hill’s daughter, 19-year-old Victoria, also relished the chance to cheer in a big stadium. She’s also a member of the Maryland Twisters.
Hill praised the professional cheerleaders for helping foster friendships among the girls and the two boys who cheered.
“The biggest thing is, the kids are happy,” she said.

A model story from the Global Down Syndrome Foundation Gala

from The News-Herald By Jean Bonchak:

Erin Farragher is fond of a large poster picturing children she modeled with at the recent Be Beautiful, Be Yourself Global Down Syndrome Foundation Gala.

She smiles as she proudly points to the photos of those who have become her friends since the Washington, D.C., event.

“The poster is her trophy,” explained her mother, Maria Dellapina.

Erin, 12, who lives with Dellapina in Burton Village, has Down syndrome and was chosen to model for the fundraiser benefitting the Linda Crnic Institute for Down Syndrome at the Anschutz Medical Campus at the University of Colorado in Denver.

The audition tape showing Erin sporting her sister’s party frock caught event organizers’ eyes and landed her the runway spot.

“You put her in something frilly and fashionable and she’s a princess,” Dellapina said. “I knew she’d want to perform.”

Once chosen, Erin, who attends Geauga Project Achieve in the Kenston School District, practiced for the special occasion by promenading around the house and waving ceremoniously.

The rehearsal served her well as she successfully strutted down the gala’s runway.

Although she had several dresses from which to choose, she said her selection was based on its pleasing pattern with a look of peacock feathers and was cut in such a way that she could twirl in it.Meeting a few celebrities and politicians in attendance was another perk.

Supermodel Beverly Johnson, the foundation’s spokeswoman who has a niece with Down syndrome, took a significant amount of time with the models, which made Erin especially happy, Dellapina said. Erin’s bright smile and hearty nod affirmed her mother’s assessment.

Erin also had a chance to meet actor Jamie Foxx’s sister, DeOndra Dixon, the ambassador for the foundation, and she danced with entertainer and songstress Gladys Knight.

Politicians attending the event included U.S. Sen. Tom Harkin, D-Iowa; and U.S. Rep. Pete Sessions, R-Texas; both advocates for the genetic condition affecting 5,500 children born each year in the U.S.

Dellapina, who was inspired by her daughter to initiate the business Spec4us, which provides custom frames for people with Down syndrome, said she noticed some of the models wearing ill-fitting eyeglasses and has since helped some of them.

With an optical technician background, Dellapina said she recognized the need for the customized glasses when she was unable to find a pair to correctly fit Erin.

She sent her own designs — which revised standard glasses to fit the facial features often associated with Down syndrome individuals — to some manufacturers and eventually found one in South Korea with whom she is working.

Dellapina said the need for such a service is obvious. She often receives positive feedback from many people, including some who said that before the adjusted frames they chose not to wear glasses because they were too uncomfortable or didn’t work.

“I just feel blessed that we are able to enrich their lives, and they can participate in school and see the world more clearly,” Dellapina said.

Meanwhile, Erin is still basking in the memories of her modeling experience.

“I think the smile on her face while she was on the runway said it all,” Dellapina said.

Mother and daughter plan to return to the gala next year, and Erin is especially looking forward to reuniting with her friends.

 “I know when we are back … she will remember each one of them,” Dellapina said.