2012 Global Down Syndrome Foundation Press Clippings

2012 Press Clippings
Be Beautiful Be Yourself Fashion Show
Global Down Syndrome Foundation
John Malone contributes $100,000 to Global Down Syndrome Foundation

By Howard Pankratz July 19, 2012 Cable TV pioneer John C. Malone is contributing $100,000 to the Global Down Syndrome Foundation to benefit the organizations annual benefit, the Be Beautiful Be Yourself Fashion Show. The fundraiser will be held at the Sheraton Downtown Denver on Oct. 13 with celebrities such as Quincy Jones, Jamie Foxx and dancer DeOndra Dixon. John J. Sie, another cable TV pioneer who worked for Malone for more than 20 years, helped launch the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation. Sie has a granddaughter with Down syndrome. Sie said he welcomed the gift from Malone. The 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 Sie, a board member of the Crnic Institute.
John Malone, Chairman of Liberty Media Corporation (Getty Images North America | 2011 file)
www.globaldownsyndrome.org

Be Beautiful Be Yourself Event Chair Nancy Sevo and fashion show models Sam Levin, Hillary MacAdam, Cameron Tafoya and Sahni Sanford were guests on Colorado & Company Sept. 28, 2012, to preview the fun at the Oct. 13 event and promote the cause.
Denver Broncos Vice President of Football Operations John Elway, Paige Elway, Denver Broncos owner Pat Bowlen and Be Beautiful Be Yourself Live Auction Chair Annabel Bowlen at the 2012 Be Beautiful Be Yourself Fashion Show in Denver.
www.BeBeautifulBeYourself.org
Dare to Play Football and Cheer Camps
Shanahan, Billick coach event for kids with Down syndrome

By Sarah Kogod June 18, 2012 Mike Shanahan donated his time to a two-day camp sponsored by the Global Down Syndrome Foundation. The Redskins head coach was joined by Brian Billick and Ed McCaffrey, and from the looks of the videos, it was a pretty rewarding weekend. CapitalGazette.com has a great account of event, and Shanahan had this to say to ComcastSportsNet about his involvement: I just enjoyed being a part of it. Its a chance to go out there and have some fun. Its a lot more rewarding for me than it is for them because they thoroughly enjoy themselves. They kinda recognize your face, you know, obviously from the Skins, and so I think they have a little bit more fun when they can talk to them on a personal basis.
Program offers cheerleading and football for kids with Down syndrome
By Pamela Wood June 3, 2012 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 Stephens 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 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. The Dragons team 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. 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 Ive ever had in my life, McCaffrey told the crowd. Weve had so much fun doing it in Colorado. Were so happy to be in Annapolis to do our first one here. This is the first time Ive 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. Navy senior Jerad Fehr of Utah said he was inspired by the passion of the young players. These kids love the game shoot, maybe more than we do, said Fehr, a safety. 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.
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Shanahan works for Down syndrome

By Andrew Walker June 18, 2012 Washington Redskins head coach Mike Shanahan teamed up with a former player and a former colleague on Saturday to support local children and adults with Down syndrome. For the first time in its existence, the Global Down Syndrome Foundation brought its Dare to Play and Dare to Cheer football and cheerleading programs to the Washington D.C. area, giving campers a chance to have fun through the game of football. The event held at the Navy-Marine Corps Memorial Stadium in Annapolis, Md. was headed by former Denver Broncos wide receiver Ed McCaffrey, according to an article from ESPN980s Chris Russell. McCaffrey brought out Shanahan, his former coach, and former Baltimore Ravens head coach Brian Billick to help participate in the festivities, which included a football game played between the Honey Badgers (coached by Billick) and the Dragons (coached by Shanahan). Eds always given back to the community, Shanahan told Russell. We were together in San Francisco,and I went to Denver, we brought him to Denver. We were actually there (Denver) for a fundraiser for Brian Griese (Judis House) and Ed was telling me he was coming out to Baltimore, and they were going to have a big get together for Down Syndrome. I told him I wasnt too far away, Im a 45 minute, hour drive. He asked me if I could come out there and talk to the team, I said Id be more than happy to. Its a great cause. Im happy to do it. Shanahan said hes very fortunate to be in the position to help organizations like the GDSF. What Im doing is representing the Washington Redskins, Shanahan said. If I can go to an event, help raise some money or go to a hospital, and put a smile on a kids face, you feel fortunate, just because you are the head coach, you are in a position to help people, and I enjoy doing it. Also participating in the camp were Washington Redskins Cheerleaders.
Be Beautiful Be Yourself DC Kickoff
Fashion show brings in $100K

By Vanessa Small July 22, 2012 The models at the Global Down Syndrome Foundations recent fashion show at the Sewall-Belmont House in Northeast Washington offered more than just catwalks. Some blew kisses. Some danced. Some struck a pose as cameras flashed. And the 200 family members and supporters in the audience clapped to a Black Eyed Peas hit. It was the foundations second Be Beautiful Be Yourself event where the models, all with Down syndrome, upstaged their Congress member or Hollywood actor escort. Following the show was
a performance by musical group Band from TV, made up of television actors who donate their performance proceeds to charity. Through sponsorships, ticket sales and the auction, the fashion show event raised $100,000, which nonprofit officials say will support the foundations advocacy and research. The whos who in attendance included actor Scott Grimes, actress Virginia Williams and Rep. Pete Sessions (R-Tex.). Corporate sponsors included Comcast, Dish Network, NextEra Energy Resources, Aflac, Altria, AT&T and Clear Channel. Clothes were designed by Greg Gaten Taylor of Rep. Ed Perlmutter (D-Colo.) accompanies Kayla Kosmalski, 6, as she models at the Be Beautiful Be Yourself fashion show. Walish Gooshe.
July 20, 2012
July 17, 2012

Alex Sessions, Sen. Tom Harkin, Kyra Phillips and DeOndra Dixon. Support the Global Down Syndrome Foundations dedication to improving the lives of those affected by Down syndrome at the Be Beautiful Be Yourself Fashion Show. The evening will spotlight models with Down syndrome, a celebrity musical performer, and expert speakers to raise awareness about the chromosomal disorder.
The Global Down Syndrome Foundation is a public nonprofit 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 Foundations primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. 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 benefiting people with Down syndrome. Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football, Cheer, Soccer and Tennis Camps, the Global Down Syndrome Educational Series, the Be Beautiful Be Yourself Dance and Fitness Classes, and the Denver Zoo Internship Program. The Foundation is an inclusive organization without political or religious affiliation or intention.
About the Global Down Syndrome Foundation
Bob Guiney to appear at Down syndrome fashion show
July 19, 2012
Bob Guiney, the man who you may better know as The Bachelor from season four of the popular show, is lending his star power to a great cause. Guiney will appear at the Global Down Syndrome Foundations Be Beautiful Be Yourself fashion show on Thursday night in D.C. Members of Congress will be escorting the models who have Down syndrome.
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Global Down Syndrome Foundation fashion show

By Riena Santa July 24, 2012 On Thursday July 19 at the SewallBelmont house & museum in DC, the highly anticipated Global Down Syndrome Foundation hosted the 2013 Be Beautiful Be Yourself Gala Kickoff Party. The exciting and fun evening included a fashion preview featuring the stylish urban bohemian look from the Wink collection. It was worn by the models with Down syndrome which were escorted by members of Congress and TV celebrities. Guests included Bob Guiney (from The Bachelor), Scott Grimes (from TV show ER), and several U.S. Congressmen including Scott Tipton, Cory Gardner, Congressman Mike Coffman, Ed Perlmutter and Greg Walden. With approximately 250 attendees from DC, family members with Down syndrome and interested parties, this grand fashion show raises awareness to the chromosomal disorder that affects more than one in 700 babies. In an effort to inform the audience, Director of Alzheimer disease research and the department of neurology the Linda Crnic Institute for Down Syndrome, Dr. Huntington Potter, presented a moving speech that raised the need to help. Abnormalities are caused by errors in the number or structure of chromosomes, and many children with a chromosomal abnormality have mental or physical birth defects. Some chromosomal abnormalities result in miscarriage or stillbirth, and understanding those chromosomes makes it easier to recognize the wide range of problems chromosomal abnormalities can cause. Guest attendee Sarah Brown said, Im here in support of my family member Laila Brown and because I believe that there is a cure that someday will be found. Brown said that Laila is very active, she has been doing 2 years of Special Olympics and various other events like this fashion show. Brown also said She has such a strong spirit and I know that events like this will help further the research process to finding a cure for this syndrome.
Sarah Brown, Helena Brown and Anna Brown
Scott Grimes and Fummi Agbebi
Brad Hennefer
Jenny Stouer and Marilyn Tolbert
Mark Fogle and Karen Feketis
Alzheimers Disease Research
July 12, 2012 Renowned scientist Huntington Potter, Ph.D., will join Alzheimers disease research and initiate the formation of a new clinical care center here in Colorado. In July, Dr. Potter joins the University of Colorado School of Medicines Department of Neurology and the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus where his lab will study the mechanism by which Alzheimers disease and Down syndrome arise and research drugs that could ameliorate or prevent Alzheimers disease. He also will begin the process of building an Alzheimers disease center for excellence in clinical care, the only one in Colorado and in a thousand-mile radius of Denver. Potter discovered and is devoted to studying the mechanistic relationship between Alzheimers disease and Down syndrome. His seminal research led to the discovery of triplication of chromosome 21 in many cells of patients with Alzheimers disease, leading Potter to postulate that people with Alzheimers have a genetic defect or an environmental exposure that leads them to develop mosaic trisomy 21/Down syndrome. In his new role as Director of Alzheimers Disease Research in the CU School of Medicine Department of Neurology and the Linda Crnic Center for Down Syndrome, Potter will develop clinical trials to prevent the onset of Alzheimers disease.
Renowned scientist joins CUs Alzheimers Research, Care Team
Im excited to be part of the Crnic Institute and the Department of Neurology here on the Anschutz Medical Campus, said Potter. Alzheimers disease and Down syndrome are two sides of the same coin and studying them together will best hasten the development of new treatments for both. In Colorado I can build the ideal joint program that should eventually benefit millions of people suffering from Alzheimers disease including those with Down syndrome. Tom Blumenthal, the Anna and John J. Sie Professor in Genomics and Executive Director of the Crnic Institute, welcomes Potter to the growing number of scientists working on Down syndrome research. Dr. Potters hire underscores how providing research funds benefitting people with Down syndrome can also benefit tens of millions suffering from diseases such as Alzheimers, congenital heart disease or certain cancers. We are pleased to be collaborating with the Department of Neurology to hire such an outstanding scientist who is focused on helping people with Down syndrome and Alzheimers disease. The average lifespan of a person with Down syndrome has more than doubled over the last three decades to 60 years. The increase is due in large part to the dismantling of inhumane institutions and improved access to life-saving care. With this increased lifespan, a large number of
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people with Down syndrome are being diagnosed with the early onset of Alzheimers disease. Current research estimates all people with Down syndrome will have the brain pathology of Alzheimers disease but only about half will have the associated degenerative cognitive symptoms. The Crnic Institute is dedicated to eradicating the medical and cognitive ill effects associated with Down syndrome, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness and government advocacy. Both the Crnic Institute and the Global Down Syndrome Foundation are made possible by the generous support of founding donors Anna and John J. Sie, whose granddaughter happens to have Down syndrome. The Anna and John J. Sie Foundation has committed more than $22 million to establish the Crnic Institute as the worldwide beacon for research and care related to Down syndrome.
Hope for Alzheimers patients

July 27, 2012 Dr. Huntington Potter, Director of Alzheimers Disease Programs at the University of Colorado, talked with 9NEWS anchor Kim Christiansen about the latest Alzheimers research. The treatment is an immune therapy called IVIG/Gammagard that has been administered intravenously for three years to a small group of participants. In trials, Gammagard offered real hope to over 5.4 million Americans with Alzheimers. The findings on the treatment, made by Baxter International, follow a frustrating 9-year research period during which no new therapies have been
discovered for the incurable brain-wasting disease. The participants did not show improvement in most of their Alzheimers symptoms, nor did they show any further decline on measures of cognition, memory, daily functioning or mood over the three years Gammagard is not available to the public, but trials on this and other Alzheimers drugs are underway. The Alzheimers Association of Colorado is holding several Walks to End Alzheimers. Denvers is September 15 in City Park.
See more at http://on9news.tv/ YJU7Ds
Down syndrome may hold key to new Alzheimers treatments

By Julie Steenhuysen Sept. 25, 2012 In a new lead on Alzheimers research, Johnson & Johnson is bankrolling a three-year pilot study of people with Down syndrome to identify the early changes that herald dementia, which afflicts up to 75 percent of adults with the condition. The aim is to generate support for a much bigger, public-private partnership funded by drugmakers, advocates and government agencies that will study at least 1,000 people with Down syndrome, tracking them from an early age and eventually testing treatments to keep dementia from developing. The study were proposing would provide insight into treating Alzheimers, but it might help individuals with Down syndrome as well, said Dr. Husseini Manji, J&Js global head of neuroscience drug development. Experts in Down syndrome and Alzheimers who gathered in Chicago for a workshop on the idea at the Alzheimers Association offices this month say it may offer the best scientific model yet for testing drugs to prevent the degenerative brain disease. The dementia that develops in people with Down syndrome may bear a stronger resemblance to the disease in the broader population because it differs from other forms of early-onset Alzheimers, researchers say. People with Down syndrome inherit a third copy of chromosome 21, giving them an extra helping of a gene that makes amyloid precursor protein, or APP, which is linked with the development of plaques in the brains of Alzheimers patients. Dementia starts much earlier in people
Alzheimers Disease Research
with Down syndrome, who develop brain plaques and tangles by age 30 and signs of dementia by age 40. The number of potential Down syndrome patients exceeds those with the genetic mutation. There are some 400,000 people in the United States and 6 million people worldwide with Down syndrome. What is not yet known is how many parents of people with Down syndrome would be willing to sign up their adult children for trials. Michelle Whitten of the Global Down Syndrome Foundation thinks many will be. Whitten, the mother of a 9-year-old with Down syndrome, says the lifespan of people with the condition has increased from 28 years in the 1980s to 60 years today because of better treatment. That means many parents who fought to give their children a good education and a worthwhile job now frequently face their decline into dementia. We just want it solved, Whitten said.
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Alzheimers Association, Linda Crnic Institute, Global Down Syndrome Foundation Launch Research Grants
Nov. 29, 2012 The Alzheimers Association, the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation launched a new research initiative to better understand the development of Alzheimers disease in individuals with Down syndrome (DS) and translate the research into improved treatments for people at risk to develop Alzheimers. The organizations are making a total of $1.2 million available for new research projects, and have issued a Request for Applications (RFA) titled Understanding the Development and Devising Treatments for Alzheimers Disease in Individuals with Down Syndrome. Letters of intent must be received by February 1, 2013, and applications must be received by March 1, 2013. Through this new initiative, we hope to better understand the mechanisms that lead to Alzheimers in people with Down syndrome in order to get us a big step closer to new treatments, said William Thies, Ph.D., Alzheimers Association chief medical and scientific officer. The eventual goal is to advance the charge toward better Alzheimers therapies for people with Down syndrome and for people without it. Were pleased to have leaders that represent a significant scientific brain trust leading this program, and we are grateful to have the scientific review apparatus and peer reviewers provided by the Alzheimers Association, said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. According to the U.S. Centers for Disease Control, Down syndrome occurs in 1 out of 691 infants in the United States and is caused by inheritance of three copies of chromosome 21. In addition to early physical and intellectual challenges, individuals with Down syndrome are at a high risk for developing the symptoms characteristic of Alzheimers. People with Down syndrome develop the two hallmarks of Alzheimers disease amyloid plaques and tau tangles in their 30s and 40s. Due to improved clinical care, people with Down syndrome are now regularly living into their sixth decade of life, causing many to develop dementia due to Alzheimers. This joint grant-making initiative is designed to enable preliminary pilot research or proof-of-principle studies that can provide strong initial data in order for the scientists to then obtain additional research support for larger-scale projects from other funding agencies. This innovative funding initiative grew out of a groundbreaking September 2012 workshop cosponsored by the Alzheimers Association, the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation. The September workshop held by our organizations brought together key scientists from the fields of Alzheimers and Down syndrome research, said Dean Hartley, Ph.D., director of science initiatives for the Alzheimers Association. We are very pleased that one significant outcome of that workshop is this much-needed joint grant-making program that can clearly help both of our populations. Collaborating closely with the Alzheimers Association makes perfect sense to us, added Tom Blumenthal, Ph.D., Executive Director of the Crnic Institute. Our goal is to foster and fund research that has direct benefit for people with Down syndrome and this joint grants program fulfills that goal.
Read more at http://yhoo.it/YK2EpO
Carol Mizel, Sarisa Saysithideth, Debbi Alpert, Shereen Pollak and Cookie Gold
Brooke Griese and Leslie & Bill Vollbracht
Kim Christiansen
DeOndra Dixon and George Dixon
Michelle Sie Whitten, Lawrence & Cathy Covell and Amy & Joe Covell
Kaia Telford, Miss Colorado Teen Hillary MacAdam, Danilo Taylor Kelly and Brianna Cordova Kelly & Brian Trommeter and Kay & Jim Burke Gallinari and Baylee Ginther
Quincy Jones and Larry Mizel
Naomi Finley, Brianna Cordova, Natasha Naomi Finley and Natasha Bedingfield Bedingfield, Sahni Sanford and Sophia Whitten Betsy & Tom Blumenthal
Greg Karsh and Peter Kudla
Brian Fallin, Fritz Manger, John Freyer Carl & Susan Zimmerman, Bob Zimmerman, Jr., Tom Donahoe, Kirby Winfield Jr., Dr. Quincy Jones, Luke Zimmerman, Jonathan Kirby Winfield, John Busby, Alex AmmerDebra & Chuck McKenney Zimmerman and Christine Phillpots man and Schuyler Cayton
Natasha Bedingfield, Sophia Whitten and Tom Whitten
Debbi Alpert and Ricki Rest
Hope Griffin, Todd Griffin, Steven Murray, Kevin Preblud, Mike Fries, Grace Fries, Anna Preblud, Darnelle Murray, Isabelle Fries and Lauren Murray
Brian & Samantha Stevens
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DeOndra Dixon, Luke Zimmerman, Quincy Luke Zimmerman and DeOndra Dixon Jones and Nancy Sevo
Tom & Michelle Whitten
Natasha Bedingfield, Luke Zimmerman and Sharon Magness Blake & Ernie Blake
Greg Karsh and Brett Perry
Inge Wefes & Huntington Potter
Kristi Fote, Ellie Atkeson and Jesse Schroffel
DeOndra Dixon, Johnny Bowlen, Quincy Jones and Pat & Annabel Bowlen
Sahni Sanford, Isaac Berant and Sophia Whitten and Conor Casey Virginia Williams
Briana Carey and Broncos Cheerleader Kara
Candy Ergen, Anna Sie and Sharon Magness Blake
John & Nancy Sevo, Paula Newberry Arnold Miss Colorados Outstanding Teen Molly Casey and Staci Unrau and Marilyn Spinner
John J. Sie, Quincy Jones and Anna Sie
Mort & Edie Marks
Ashley Wolf, Elaine Wolf and Sandy Wolf
Ross Wilkins and Pat McDonnell
Casey & Brett Perry
Orin Hildstad, Allison Sie, Debbie Sie, Justin Hoffman, Shaela Hoffman, Susan Sie, DeOndra Dixon and Quincy Jones
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DENVER, CO
Leadership Circle Honorary Chairs
Congressman Pete Sessions The Honorable Cathy McMorris Rodgers and CDR. Brian Rodgers, USN (Ret.) Congresswoman Eleanor Holmes Norton Congressman Chris Van Hollen Governor John Hickenlooper The Honorable Ken Salazar & Hope Hernandez-Salazar Senator Mark Udall & Maggie Fox Senator Michael Bennet & Susan Daggett Congressman Mike Coffman Congresswoman Diana DeGette Anna & John J. Sie Mike & Amber Fries Brian & Kathy Stevens Cookie Gold, Ricki & Dave Rest, Laura Barton & William Matthews Debbi & Lee Alpert Jules Haimovitz Peter Kudla John & Leslie Malone Jack & Pat McDonnell Shereen & Michael Pollak Don & Sue Sturm Leslie & Bill Vollbracht Congressman Cory Gardner Congressman and Mrs. Doug Lamborn Congressman Ed Perlmutter Congressman Jared Polis Congressman Scott & Jean Tipton
Honorary Committee
Natasha Bedingfield Jamie Foxx Luke Zimmerman DeOndra Dixon George Dixon, Diedra Dixon & Annette Dixon Kimberly Andrew Samantha Stevens Brian & Kathy Stevens Katherine Vollbracht Winfield Allison & Kirby Winfield Jr. Dana Vollbracht Chase Turner Perry Casey & Brett Perry Brandon & Jackie Perry Susan & Randy Karsh Sophia Kay Whitten Doug Wood, James & Benjamin Sie Debbie Sie, Justin Hoffman & Shaela Hoffman Susan Sie & Allison Sie Tom & Betsy Blumenthal Fran & Kris Hickey Denver Broncos/Pat & Annabel Bowlen John & Paige Elway Virginia Williams Danilo Gallinari Andre Iguodala Conor Casey Chauncey & Piper Billups Kim Christiansen/9NEWS Susie & David Duval Brook & Brian Griese Beverly Johnson Jim & Cheli Kellogg John & Linda Lynch Ed & Lisa McCaffrey John C. & Nichole McGinley Miss Colorado Hannah Porter Jeff Probst & Lisa Ann Russell Tim Shriver & Linda Potter Billy Van Heusen Broncos Cheerleaders Nuggets Dancers
Sponsors
Atelier Dr. John C. & Leslie Malone Haute Couture Anna and John J. Sie Foundation Laura Barton & William Matthews Mike & Amber Fries / Liberty Global Jules Haimovitz McDonnell Family Foundation Shereen & Michael Pollak / Hyde Park Jewelers Sturm Family Foundation / Don & Sue Sturm Leslie & Bill Vollbracht Couture The Anschutz Foundation Sharon Magness Blake & Ernie Blake Brownstein Hyatt Farber Schreck, LLP Cookie Gold, Ricki & Dave Rest MDC / Richmond American Homes Foundation The Whitten Family In Vogue Pandora @ Cherry Creek Sandy Wolf & Elaine Wolf from The Melvin and Elaine Wolf Foundation Designer Denver Broncos / Pat & Annabel Bowlen Jim & Kay Burke Lawrence Covell Dish Network Land Title Guarantee Company Bob & Betsy Leighton Perky Jerky SomaLogic Steele Street Bank & Trust Jeff & Mary Tuten University of Denver
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WASHINGTON, DC
Host Committee
The Honorable John Barrow The Honorable Michael Bennet The Honorable Mary Bono Mack The Honorable Ann Marie Buerkle The Honorable Michael C. Burgess, M.D. The Honorable David Camp The Honorable Lois Capps The Honorable John C. Carney The Honorable Andr Carson The Honorable Bill Cassidy The Honorable Howard Coble The Honorable Gerald E. Connolly The Honorable Geoff Davis The Honorable Diana DeGette The Honorable Jeff Fortenberry The Honorable Cory Gardner The Honorable Darrell Issa The Honorable Adam Kinzinger The Honorable Cathy McMorris Rodgers The Honorable Ed Perlmutter The Honorable Jared Polis The Honorable Scott Rigell The Honorable Pete Sessions The Honorable Richard Shelby The Honorable Chris Smith The Honorable Lamar Smith The Honorable Scott Tipton The Honorable Mark Udall The Honorable Chris Van Hollen
Sponsors
Anna and John J. Sie Foundation The Whitten Family Comcast Dish Network Kristine Bomgaars Next Era Energy Clear Channel AFLAC AT&T Wal-Mart Johnson & Johnson Printing Industry Association
Quincy Jones Exceptional Advocacy Award recipients Sen. Tom Harkin and Rep. Pete Sessions with Gladys Knight
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Rep. Greg Walden, Mary Kathryn Steel and Michael Steel
Chris Brown and Pat Winders
Bob Guiney and Deana Perlmutter
Models with Down syndrome and friends
Fay Augustyn and Brad Groters
Al Mottur and Jane Adams
Laila Brown and Bob Guiney
Michael Steel and Mary Kathryn Steel
Kimberly Andrew, DeOndra Dixon and Virginia Williams
Loretta and Julia Greene
John Blasovich, Brandy Snow and Katie Hauser Patrick and Sophia Whitten
Jay Gore and Megan Moore
Patti McVay and Virginia Williams
Catherine, Sarah, Anna and Helena Brown
Valerie Williams and Sofia Sanrad
Mark Fogle and Karen Feketis
Brian Silver and Virginia Williams
Huntington Potter
John Stephens and Nick Stephens
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Brandy Hellard, Erica Stocker and Kelly Eaton
Abby Perlmutter and Mark Perriello
Brad Hennefer
Melissa Lesmes and Gina Latcheran
Richard Levick and Mark Irion
Huntington Potter and Rep. Mike Coffman
Erin Farragher and Maria Stephanos
Jessica Green and Rep. Greg Walden
Cate McCanless and Tim Clark
DeOndra Dixon
Frank Stephens and Virginia Williams
Greg Taylor and Kris Bomgaars
Lisa and Cassie Harwood
Rep. Cory Gardner and Julia Greene
Models with Down syndrome, with Virginia Williams and Bob Guiney
Dee Daniels and Pat Winders
Tanner French and friend
Tom Whitten and Bill Greene
Rep. Scott Tipton and Scotty Lesmes
Maria and Erin Farragher
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Down Syndrome Research Funding
Down syndrome patient registry established by NIH
Oct. 26, 2012 The first national Down syndrome patient registry to be housed at the Eunice Kennedy Shriver National Institute of Child Health and Human Development was spearheaded by the Global Down Syndrome Foundation with support from many organizations, including those on the National Institutes of Health (NIH) Down Syndrome Consortium. The national registry will collect much needed medical information from people with Down syndrome, and connect people with Down syndrome and their families with scientists engaging in research that is of interest to those people and their families. The registry will be used to identify critical health trends, the most effective treatments and clinical trials for potential therapies. The National Institutes of Health has awarded a $300,000 contract to PatientCrossroads to jump-start and operate the registry through September 2013. People with Down syndrome or their families will be able to enter and update contact information and health history in an online, secure, confidential database. Participants can choose which information they would like to display, receive reminders about their own medical care and compare their medical information to that of other registrants confidentially and anonymously. Those who give permission may be contacted by authorized clinicians and researchers to see whether they are interested in joining a research study. This is so important to get even a baseline on health issues associated with Down syndrome, said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. Clearly other conditions and diseases have registries and biobanks, and our community deserves the same. The advantage of being late to the table is that we have put lots of best-practice protections in place to benefit people with Down syndrome and their families. Clearly if implemented and supported appropriately, this will be a huge game-changer regarding health outcomes for our children and adults with Down syndrome. In 2010 the NICHD and Global Down Syndrome Foundation co-sponsored the first Down Syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
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Global Down Syndrome Foundation Executive Director Michelle Sie Whitten spoke before the United Nations as the international group marked its inaugural World Down Syndrome Day on March 21, 2012. Because Down syndrome is the least-funded genetic condition by the U.S. National Institutes of Health, it was a great stage to promote awareness and advocacy. Global Down Syndrome Foundation International Spokesperson Quincy Jones and Colorado Gov. John Hickenlooper speak at the 2012 Be Beautiful Be Yourself Fashion Show in Denver about the need for increased funding for Down syndrome research.
By Michelle Diament Feb. 24, 2012 New data shows that federal funding for Down syndrome research dropped last year, despite already lagging behind other conditions, and thats leaving advocates none too pleased. The National Institutes of Health spent $20 million on Down syndrome research in 2011, according to funding data released earlier this month. The same amount is expected for this year and next. Thats down from $28 million in 2010 and $22 million in 2009. Part of the reason for the decline is a loss of federal stimulus dollars, which had propped up research funding for many conditions in 2009 and 2010. However, advocates argue the decline in
Down syndrome funding is particularly egregious because they say that based on 2010 levels, the chromosomal disorder was already the least funded of the genetic conditions that receive research money from NIH. In a joint statement this week, three Down syndrome organizations banded together to oppose the cut. We are very disappointed, reads the statement from the National Down Syndrome Congress, the National Down Syndrome Society and the Global Down Syndrome Foundation. While funding for other conditions such as fragile X and cystic fibrosis increased, funding for Down syndrome at the National Institutes of Health is significantly less and has plummeted since 2000. The organizations pointed out that research
Funding for Down syndrome research shrinks
into Down syndrome has benefits beyond those currently affected by the disorder since individuals with Down syndrome are at higher risk for Alzheimers disease, childhood leukemia and other conditions. By comparison, autism research benefited from $169 million in 2011, while cerebral palsy got $23 million and $29 million went to study fragile X syndrome. Despite the decline in federal research dollars, there have been some positive signs with regard to Down syndrome research recently. Last fall, the NIH formed a first-ever consortium to help implement the agencys Down syndrome research plan. Whats more, there is legislation pending in Congress calling for increased funding for Down syndrome research.
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Starting a supergroup for Down syndrome research

Oct. 19, 2012 Through the work of the Linda Crnic Institute (LCI) for Down Syndrome and the institutes $1 million in challenge grants, a supergroup for Down syndrome research is being formed. The announcement was made this morning by Tom Blumenthal, Ph.D., executive director of the LCI, at the First LCI Down Syndrome Symposium. The event, which will be an annual event, drew about 150 people to the Hensel Phelps Auditorium West. The grant program, called the annual Crnic Grands Major Challenge Grants, is funded by the Anna and John J. Sie Foundation, the Global Down Syndrome Foundation, the chancellors of the University of Colorado Anschutz Medical Campus and Boulder campus and the dean of the School of Medicine. The LCI will award grants of up to $100,000 a year to scientists across research disciplines at the Anschutz and Boulder campuses. Blumenthal is optimistic about what the Down syndrome supergroup will achieve. I believe we will attract the best and brightest scientists with innovative scientific proposals, he said. Most important, we expect the science will clearly benefit people with Down syndrome. Down syndrome affects one in every 750 live births in the United States, but is one of the least-funded genetic conditions by the National Institutes of Health. The LCI, and its funding partner, the Global Down Syndrome Foundation, aim to correct the disparity in funding as well as provide the best clinical care to people with Down syndrome and work to eradicate the conditions medical and cognitive ill effects. Michelle Sie Whitten, director of the Global Down Syndrome Foundation and mother of a child with Down syndrome, said she was shocked by the defunding of Down syndrome research. She said she is grateful for the support of her parents, Anna and John Sie, who started the LCI and the foundation, as well as
Linda Crnic Institute
Read more at http://bit.ly/VUbs1m
the University of Colorado for its pioneering research. The LCI is the first academic home in the United States committed to research and medical care for people with Down syndrome. You should feel really proud about your campuses and where CU is going. We looked at other campuses (for the LCI, including Stanford and others, Whitten said. We chose CU because of the great science, the great leadership and the great synergies here. Blumenthal explained that the LCI is dedicated to solving the mysteries behind Down syndromes cause as well as improving the lives of people affected by the condition. Were at the right place and right time to do this, he said. Theres a variety of new technologies that are available that we can answer questions now that we could not have answered a few years ago.... We can do it here because we have great scientists here and in Boulder who can do exciting projects.
Fashion show reveals a good cause
Renowned scientist Blumenthal to lead Linda Crnic Institute

July 5, 2012 Nationally renowned molecular biologist Tom Blumenthal, Ph.D, has been named the new executive director of the Linda Crnic Institute for Down Syndrome, headquartered at the University of Colorado School of Medicine on the CU Anschutz Medical Campus. Blumenthal, who is leaving his post as chairman of the Molecular, Cellular and Developmental Biology Department at the University of Colorado Boulder, brings an impressive track record of academic management and basic science experience. Morally, I believe we are obligated to help people through scientific study, Blumenthal said. Scientifically, I am intrigued with the Crnic Institutes mission to eradicate the medical and cognitive ill effects associated with Down syndrome. Given current technological advances, I believe we have a fighting chance at delivering. My first focus will be to dramatically increase the amount of research the Crnic Institute is engaged in and to initiate a competitive Grand Challenges grant program within the University of Colorado system. Blumenthal is no stranger to the Crnic Institutes mission. From its inception he has served on the Crnic Institutes Scientific Advisory Board; he has belonged to the Board of Directors for the past year. We are excited about the leadership, scientific knowledge, professionalism and passion Dr. Blumenthal brings to the Crnic Institute, said John J. Sie, cotrustee of the Anna and John J. Sie Foundation and founding donor of the Crnic Institute. With Tom at the helm, we are confident our $22 million donation will create unprecedented excellent quality medical care but also important basic research benefiting people with Down syndrome. Read more at http://bit.ly/ZnDFea
See more at http://on9news.tv/YrxFOr
It has raised more than $3 million for Down syndrome research, medical Oct. 10, 2012 care, advocacy and education. Equally important, it has raised awareness regarding the shocking disparity of funding for people with Down syndrome, while successfully emphasizing their abilities. This years Be Beautiful Be Yourself Fashion Show for the Global Down Syndrome Foundation is on Saturday, Oct. 13, at the Sheraton Downtown Denver Hotel. On Friday, Oct. 19, the first annual Linda Crnic Institute Down Syndrome Symposium will be held in the Phelps Auditorium on the Anschutz Medical Campus. This symposium is for scientists interested in Down syndrome.
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Prenatal Testing Pamphlet
Global Down Syndrome Foundation, NDSC publish Prenatal Testing Pamphlet

Nov. 14, 2012 The Global Down Syndrome Foundation and the National Down Syndrome Congress announced the English and Spanish publication of the first Down Syndrome Prenatal Testing Pamphlet. The hallmark pamphlet will be distributed electronically and in print format nationally through medical professionals as well as available directly to pregnant women and families. The Down Syndrome Prenatal Testing Pamphlet is intended to eliminate confusion at a time when advice and guidance can vary dramatically from doctor to doctor and counselor to counselor, and where there was previously no accessible, consistent resource for women and families. Recent research shows that the majority of medical students and doctors do not receive adequate training in prenatal diagnosis for Down syndrome and that parents often receive inaccurate information about the diagnosis. Although prenatal testing for Down syndrome has been available in the United States since the 1970s, there has not been an easy-to-read, easy-to-update pamphlet available for pregnant women distributed through the offices of medical professionals. The pamphlet that the Global Down Syndrome Foundation and the National Down Syndrome Congress are providing will be a much needed and welcomed resource, said Nanette F. Santoro, M.D., Chair of the Department of Obstetrics and Gynecology at the University of Colorado School of Medicine. The pamphlet was designed by a group of medical professionals, researchers, Down syndrome experts and parents over a six-month period. Through the websites, mailing lists and newsletters of the Global Down Syndrome Foundation and the National Down Syndrome Congress, more than 200 respondents from the Down syndrome community weighed in on a draft version of the pamphlet before its finalization. Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation, explains, Providing prenatal testing information for Down syndrome can be politically charged. But over 90% of survey respondents were on the same page about getting accurate information into the hands of pregnant women, and applauded our efforts. I believe that our organization and the National Down Syndrome Congress have been very respectful about listening to our communitys hopes and fears Down Syndrome Foundation and we believe tens of thousands of women and families will benefit from having the current, accurate information presented in the pamphlet. The pamphlet also dispels the notion that new non-invasive 10-week blood tests for Down syndrome are diagnostic or 100% accurate. In fact, new blood tests on the market have shown high levels of accuracy only within a defined high-risk population (e.g. pregnant women over the age of 38). These tests are not recommended for women with low-risk pregnancies because their accuracy has not yet been demonstrated. The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to measure the impact of the pamphlet through follow-up surveys and to monitor advances in prenatal testing, and the pamphlet will be updated as appropriate. The pamphlet format allows for easy updates and distribution. Over the next several months, both organizations will be providing additional links and resources associated with a prenatal diagnosis of Down syndrome. For free downloads of the pamphlet or to learn more, visit www.downsyndrometest.org.
and providing an even-handed resource. Of course it is important to remember that our number one audience must be pregnant women. We believe that this pamphlet goes a long way in satisfying the 2008 Prenatally and Postnatally Diagnosed Conditions Awareness Act co-sponsored by Senators Edward Kennedy (D-Mass.) and Sam Brownback (R-Kan.), said David Tolleson, Executive Director of the National Down Syndrome Congress. Our members and friends have been extremely supportive of this joint initiative with the Global
Global Down Syndrome Foundation Executive Director Michelle Sie Whitten and Devils Advocate host Jon Caldara discussed Down syndrome research and the new Down Syndrome Prenatal Testing Pamphlet on Colorado Public Television on Oct. 29, 2012.
The pamphlet that the Global Down Syndrome Foundation and the National Down Syndrome Congress are providing will be a much needed and welcomed resource. Nanette F. Santoro, Chair of the Department of Obstetrics and Gynecology at University of Colorado School of Medicine
Through a distribution agreement with Sequenom CMM, about 28,000 English and 6,500 Spanish pamphlets were distributed to physicians and hospitals nationwide within the first two months
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Global, other Down syndrome organizations join forces

Feb. 13, 2012 The Global Down Syndrome Foundation, the National Down Syndrome Congress and the National Down Syndrome Society published a joint statement regarding disappointment in the National Institutes of Healths decrease of research funding for Down syndrome. Down syndrome is the leastfunded major genetic condition by the NIH despite being the most frequent chromosomal disorder. The funding for research benefiting people with Down syndrome at the NIH started a continual and precipitous decline in the year 2001. Read more at
Collaborative Efforts
Nov. 19, 2012 The Global Down Syndrome Foundation, the National Down Syndrome Congress and the National Down Syndrome Society published a joint release regarding collaboration on educational resources, including prenatal testing for pregnant women. Global and NDSC jointly produced the Down Syndrome Prenatal Testing Pamphlet, and NDSS is rolling out a prenatal testing information state advocacy initiative, a first-of-its-kind toolkit that encourages states to pass legislation modeled after a bill recently passed in Massachusetts.
Read more at http:// bit.ly/10tld3O
http://bit.ly/Z4DG4t
After the launch of the Down Syndrome Prenatal Testing Pamphlet, Huffington Post Live welcomed Global Down Syndrome Foundation Executive Director Michelle Sie Whitten (above left), Global Down Syndrome Foundation Quincy Jones Exceptional Advocacy Award recipient Karen Gaffney and her mom, Barbara (top left), and OBGYN Kelly Lennon (top right) on Dec. 12, 2012. The show was hosted by Nancy Redd (above right) and talked about the need for information and support for pregnant women.
Along with the Down Syndrome Prenatal Testing Pamphlet, the Global Down Syndrome Foundation and the National Down Syndrome Congress launched downsyndrometest.org, a website that allows pregnant women, families, Down syndrome organizations and medical professionals to view, learn about and download the pamphlet in English or Spanish. In just its first six weeks, the website had more than 2,000 unique visitors and over 12,000 pageviews. More than 2,500 pamphlets have been requested by people visiting the website since it launched.
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Global Down Syndrome Educational Series

November 2012 Dr. Fran Hickey and the Multi-disciplinary team at the Anna and John J. Sie Center for Down Syndrome at Childrens Hospital Colorado
Sie Center for Down Syndrome
May 2012 Dr. Libby Kumin, Professor of Speech-Language Pathology, Loyola University
Nearly 3,500 medical professionals and family members of people with Down syndrome have attended the Global Down Syndrome Educational Series
A special Thank You goes out to our wonderful photographers: Jason Grubb, Karen Rubin, Debbie and Steve Crescelius, John Sunderland, Steve Peterson, Glory Weisberg, Jamie Cotten, Craig F. Walker, Black-Tie Colorado, Black-Tie D.C., DC Hot Spots, The Villager Newspaper, John Ditirro, Lindsay Pierce, Anya Semenoff, Daniel Petty, Leigh Vogel, Riccardo Savi, Michael Campbell, Getty Images, Karl Kerridge, Steve Ponder, Eric Rose, Jason Powers, Connie Walsh
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Sie Center / Be Beautiful Be Yourself Fashion Show
Lifes ups and downs: Sie Center helps kids live to their potential
By Peter Jones April 26, 2012 As the Anna and John J. Sie Center for Down Syndrome marks its first anniversary, the little girl who inspired the organization is a walking testament to the potential in children who carry the chromosomal condition. Ninety percent of how she functions is just like any other kid her age, Michelle Sie Whitten said of her 8-year-old daughter. She goes to a school with typical kids. She is in the typical classroom. She is expected to do reading and writing and math and everything else the other kids are doing and behave herself. The reasons for increased functioning in patients with Down syndrome range from the social to medical, but in large part, the change is rooted in growing awareness and better treatments and therapies for a once-ostracized population. Facilities like the Sie Center, based at Childrens Hospital Colorado in Aurora, help advocate for the condition and offer a multidisciplinary menu of medical, speech, physical and educational therapies to kids like Whittens daughter. It really hit home when we were struggling with her reading, the mother said. We saw a huge sea change in her growth academically. The Sie Center has helped hundreds of other families in Colorado and other states realize their childs potential at what has become the most comprehensive Down syndrome treatment facility in the Rocky Mountain region. The organization was born as a sort of twin brainchild with the birth of Whittens daughter in 2003. The girls grandparents John Sie, the founder of Douglas County-based Starz movie channels, and his wife, Anna, were determined from the start to make life better for their new granddaughter and other kids like her. The facility would become part of the Linda Crnic Institute for Down Syndrome at the University of Colorado School of Medicine. That meant the results of new cutting-edge research would be put into practice almost immediately. Facilities, such as the Sie Center, have become increasingly important as the Down syndrome population grows, especially with a related increase in older parents. In the last two decades, according to some estimates, the frequency of Down syndrome in live births has increased from 1 in 1,000 to 1 in 700. Whitten is executive director of the Global Down Syndrome Foundation, an organization that continues to fundraise in support of the Sie Centers services, which are generally covered by health insurance and Medicaid. Thats thanks to people like the Sies who stepped up and did this, said Dr. Francis Hickey, the centers clinical director. The opportunity and change that comes out of this is going to be very impactful on the families and the kids.
Read more at http://bit.ly/13goMiP
Although many with Down syndrome score anywhere between 35 and 70 on IQ tests, some of that may be as connected to communication abilities as cognition, Hickey said. Even so, the Down syndrome community is more susceptible to medical problems that range from heart disease and cancer to hearing loss and sleep apnea. Life expectancy is about 60, a number that has steadily risen in recent decades. Some challenges of having Down syndrome were influenced by a less than welcoming environment. For much of history, including most of the 20th century, people with the condition were institutionalized in settings where few of their associated medical conditions were treated. Patricia Winders, the Sie Centers physicaltherapy director, says such neglect led to a large number of premature deaths among children and young adults. Since the institutionalization has ended, the children have been raised in families in their homes, Winders said. It was really at that point that people started looking to see the potential of people with Down syndrome.
Be Beautiful Be Yourself gala kicks off

By Glory Weisberg Aug. 30, 2012 The Global Down Syndrome Foundation Be Beautiful, Be Yourself kick off, Aug. 23, filled the Lawrence Covell shop in Cherry Creek North to the sidewalk with supporters and models. Event chair Nancy Sevo, dynamite in red, chatted up the throng before Denise Plante narrated the fashion show that featured people with Down syndrome wearing fashions from the Covell shop. Michelle Whitten, daughter of Anna and John J. Sie and wife of Tom Whitten, runs the Global Down Syndrome Foundation that supports research, education and treatment of people with Down syndrome. The foundation created the Linda Crnic Institute at the local Anschutz Medical Campus, already making a difference with funds from the annual gala, just about the biggest benefit on the local nonprofit event scene. Annabel Bowlen was at the kickoff and is among 10 people chairing event committees. She chairs the live auction, with Kay Burke chairing the silent auction. Judi Wolf is in charge of program and talent, while Judianne Atencio is handling public relations. An honorary committee is extensive so this will likely be a sold out gala thats already counting a $900,000 start.
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Programs
Grants to spur Down syndrome education

March 3, 2012 The Global Down Syndrome Foundation (GDSF) and the National Down Syndrome Congress (NDSC) are making available grants to support new educational programs. The two organizations will co-manage and co-fund the Global Down Syndrome Educational Grants that will benefit people with Down syndrome. Five grants of up to $15,000 each will be offered to NDSC affiliates over the coming year. The grants were first announced at a workshop at the recent Down Syndrome Affiliates in Action Conference in Washington DC. We are grateful to the National Down Syndrome Congress for providing us market research that highlighted a need in their local affiliate community for more educational programming and funding, said Michelle Sie Whitten, executive director of GDSF. Our hope is that we can provide these grants each year to seed programs that can then use proof of concept results to find sustainable funding elsewhere, she added. If [the pilot is] successful, perhaps we can help launch dozens, if not hundreds, of programs in the future. The Down syndrome community is truly coming together in a wonderful collaborative spirit and this is a perfect example of that, said David Tolleson, executive director of NDSC. He went on: Our affiliates do wonderful work but funding is difficult, especially for new programs. We are so pleased to be working with the Global Down Syndrome Foundation to address this need and supply much needed funds to people who work tirelessly towards improving the lives of people with Down syndrome.
The Joy of Movement:
Boston Ballet gives students with Down syndrome the chance to dance
Oct. 1, 2012 Meet Staci Unrau, a precocious six-year-old who spends her time playing on a swing set, rearranging her books, andof coursetaking dance classes. But as a child with Down syndrome, a chromosomal condition that causes physical and mental developmental delays, Unraus ballet lessons are all the more important: These classes combine learning plis with strengthening muscles and building confidence. 5280s Jeff Panis and Daliah Singer followed Unrau as she played at home and sashayed her way through the Colorado Ballet and Global Down Syndrome Foundations Be Beautiful Be Yourself Dance program.
See more at http://bit.ly/YipqIt
Tiny dancer
By Mary Grimes Nov. 1, 2012 Inspired by the success of Adaptive Dance, Colorado Ballet brought a similar program to the greater Denver community, implementing the Global Down Syndrome Foundations Be Beautiful Be Yourself Dance Class in 2010. Basing the program on the Boston model, the faculty at Colorado Ballet created a program in partnership with the Anna and John J. Sie Center for Down Syndrome at Childrens Hospital Colorado. It too has had incredible success; starting with only a few students in the first year, the program now runs two full classes a week. Like the Boston Ballet program, the mission of Be Beautiful Be Yourself is to help students develop both motor skills and social and personal skills, with the ultimate goal of helping them acquire the confidence and physical skills to move into other classes within the school.
Read more at http://bit.ly/W8oGY9
Be Beautiful Be Yourself Dance Class
Be Beautiful Be Yourself Fitness Class
Be Beautiful Be Yourself Hollywood Ball
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Luke Zimmerman to be honored for his advocacy for those with Down Syndrome
By Steve Simmons Oct. 12, 2012 Resident Luke Zimmerman will receive the Quincy Jones Exceptional Advocacy Award at the Global Down Syndrome Foundations 2012 Be Beautiful Be Yourself Fashion Show tomorrow in Denver. Zimmerman, who has Down Syndrome, has played Tom Bowman on the ABC Family TV series The Secret Life of the American Teenager since the first season in 2008. Zimmerman was contacted by the foundation and will be honored for his role on the show, presenting a positive image of people with Down Syndrome and serving as an outstanding advocate. Its amazing. Something I never got before, said Zimmerman. Previous award recipients include Quincy Jones, John C. McGinley, Timothy Shriver, Patrick Kennedy, Rep. Pete Sessions, Sen. Tom Harkin, DeOndra Dixon, Karen Gaffney and Sujeet Desai. Zimmerman, who also works as a clerk at a local courthouse, is a 1997 graduate of Beverly High. He was on the Norman football team, playing strong safety, that won the Ocean League and lost to Atascadero in the semi-finals. Coach (Carter) Paysinger put me in in the fourth quarter, recalls Zimmerman. He was also a member of the chorus in the school production of Pippin. Hes been acting since 8, while a student at Horace Mann, appearing in the TV movie Daughter of the Streets. He keeps up his acting skills as part of a group at Performing Arts Studio West in Inglewood, for people with disabilities interested in music, dance and performance. Its something I want to continue. I love acting and doing the series; its fun. The cast and crew are proud of me; and thats great. When The Secret Life of the American Teenager, created by Brenda Hampton, premiered, it became ABC Familys most-watched series premiere. Now after five
seasons, and the 100th episode filming in June, the network has cancelled the series. The youth-oriented drama, has seen its high school- and college-age charactersdealing with pregnancy, sex, drug-use and friendshipgrow up. Zimmerman has played the-sometimes-gettinginto-trouble adopted older brother of high schooler, Grace Bowman (Megan Park). The show will air a holiday special on Nov. 19, following an allday Secret Life marathon; and the final dozen installments will begin running in March 2013. The fashion show is the major fundraiser for Global (www.globaldownsyndrome.org) and benefits the Linda Crnic Institute for Down Syndrome. The institute is the first U.S. organization with the mission to eradicate the medical and cognitive ill effects associated with Down syndrome through basic and clinical research and through clinical care. The institute incorporates scientific partners both locally and globally.
Attended by professional athletes, politicians, dignitaries and celebrities, the fashion show will feature a red carpet and interviews for Zimmerman with local TV and press. For the fashion show, he will escort some of the models, all with Down Syndrome.
Fresno boy an ambassador for Down syndrome

By Bethany Clough Oct. 7, 2012 Six-year-old Elijah De La Cerda of Fresno can win people over with a single smile. Throw in his tendency to bust a move when he has an audience and the hugs he doles out to strangers, and Elijah has a good shot at making even Oscar the Grouch giggle. Even if Elijah didnt have Down syndrome, he would have a story to tell. But his condition, combined with his personality and the countless Down syndrome awareness events he has participated in, have turned the brown-eyed youngster into a spokesperson for people with Down syndrome. He is on the cover of a national Toys R Us toy guide with actress Eva Longoria, and he has landed a modeling gig for a clothing boutique. Everywhere he goes, Elijah reels in people who might otherwise be wary of a person who looks like him. class. A little boy who had just met Elijah told his own mom, He doesnt talk. Elijahs mom chimed in, explaining that he does talk, hes just still learning how. Without prompting, Elijah walked up to the boy, who was holding a sports drink in both hands. Elijah put his hands on the boys wrists, pulled his arms apart and enveloped him in a hug. Suddenly the group was laughing and chatting. Elijah has hearing problems and though he still is learning to pronounce words, he knows them. He frequently communicates using sign language. Elijah was one of 20 children and young adults chosen from 70 who auditioned for the fashion show at the $500-a-plate Global Down Syndrome Foundation fundraiser in Denver on Saturday. The kids were instructed to walk up to a table of judges and strike a pose, like a model would at the end of the runway.
Hes a spokesperson for anyone whos different, said his mom, Jami De La Cerda of Fresno. She and others who work with people with Down syndrome say
they should be defined by more than their disability. Elijah has a knack for making you do that. Last week he demonstrated it while leaving his tae kwon do
Read more at http://bit.ly/XHgFGL
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Global Down Syndrome gala raises $1.5 million

By Joanne Davidson Oct. 18, 2012 The Hollywood contingent Quincy Jones, Natasha Bedingfield, Stepfanie Kramer and Virginia Williams certainly added zing to the Global Down Syndrome Foundations fourth Be Beautiful Be Yourself Fashion Show. Yet even they would admit that their stature was eclipsed by DeOndra Dixon, Luke Zimmerman and the 27 other young people with Down syndrome whose sparkle lit up the Sheraton Denver Downtown. In addition to modeling clothing from Little Mes, Gracies and Mens Wearhouse, Dixon, the sister of Academy Award-winning actor Jamie Foxx, and Zimmerman, who stars on The Secret Life of the American Teenager, were recognized as the past and current recipients, respectively, of the Quincy Jones Exceptional Advocacy Award. Jones is the international spokesman for
the cause, and its a job he relishes. These kids deserve a chance, and the Global Down Syndrome Foundation gives it to them. I love how you guys roll, he declared. Foxx received the award, too, and accepted via videotaped message sent from a film location in Canada. Nancy Sevo chaired with help from Annabel Bowlen, Debra McKenney, Judi Wolf, Jay Mills, Kay Burke, Nicole Gampp, Shane Phillips, Mary Tuten and Judianne Atencio. Quinn Washington, Kristi Fote and Jesse Schroffel led the effort to involve young professionals. Bowlen, whose husband, Pat, owns the Denver Broncos, was the live-auction chair and contributed three of the most popular items: dinner for 10 at Elways Cherry Creek with the Bowlens and John and Paige Elway; the opportunity to enjoy a Broncos home game with the Bowlens in the owners box; and a flyaway on the team charter for an away game. Read more at http://bit.ly/13vdiUe
Global Down Syndrome benefit is expanding

By Joanne Davidson Aug. 30, 2012 Lets 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. 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. Its Time will be a collection of vintage, designer and other new or lovingly cared-for watches and clocks. 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 Centers Cherish the Children Guild. Guests at the kickoff also enjoyed hors doeuvres from Catering by Design, informal modeling and a runway segment that had children with Down syndrome appearing in clothes from Little Mes 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. Whats 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.
Read more at http://bit.ly/W8Oqnr
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Individuals with Down syndrome hit gridiron with Ed McCaffrey
By Catrina Linhard June 23, 2012 Hundreds of people spent their Saturday watching and participating in Ed McCaffreys Dare to Play football camp presented by the Global Down Syndrome Foundation. Individuals with Down syndrome, ages ranging from 10 to 35, hit the grid iron at Valor Christian High School after being prepped dexterously by former All Pro wide receiver and three-time Super Bowl champion Ed McCaffrey and other former professional athletes. Celebrity coaches for each team were Jack Del Rio, current defensive coordinator for the Denver Broncos, and Brian Dawkins, former safety of the Denver Broncos. The Denver Broncos cheerleaders were also there to lead the half time performance by the Dare to Cheer camp made up of individuals with Down syndrome ranging from ages 7 to 45.
See more at http://bit.ly/XBqVhN
Former Broncos receiver Ed McCaffrey, Valor Christian host Down syndrome football, cheerleading camp
Members of the Denver Broncos Cheerleaders Dare to Cheer Camp took the field during halftime of a Denver Broncos game to show off their skills in front of thousands of fans at Sports Authority Field at Mile High.
By Neil Devlin June 23, 2012 Former Broncos wide receiver Ed McCaffrey hosted a star-studded football and cheerleading camp for individuals with Down syndrome on Saturday at Valor Christian High School. He was joined by Denver defensive coordinator Jack Del Rio, recently retired Broncos safety Brian Dawkins, former Broncos place-kicker David Treadwell, Broncos mascot Miles, Denver cheerleaders, skydivers, tumblers and more than 50 players and coaches from Valor Christian, the reigning three-time state champion. But none was more important than the likes of Brad Hennefer, who participated in the Dare to Play Football Camp sponsored by the Global Down Syndrome Foundation, or Kayla Gutierrez, a member of the squad that comprised the Dare to Cheer segment. They were among dozens of proud participants. Thats who this is about, McCaffrey said. Them. It was McCaffreys third annual event, and not even the states stretch of searing heat prevented participants from a football fix. Hennefer has a Golf for Life foundation in his name, resides in Cherry Hill, N.J., and is credited with being the first Down syndrome player in two varsity sports. He scored a touchdown Saturday in the lunchtime scrimmage and spiked the ball in the end zone like an NFL player gunning for SportsCenter. Its great, Hennefer said. Brian Dawkins was my favorite Eagles player. Gutierrez, 22, seemed as proud of her uniform as she was of the opportunity to join the Broncos cheerleaders. Its very good, said Gutierrez, who resides in Lafayette and works at Safeway. Its fun, and I just like to cheer. On the field, after assorted drills and meetings with Del Rio and Dawkins, who headed the teams, Down syndrome players enjoyed competing on the artificial surface and were delighted about taking handoffs and catching passes from Del Rios son, Luke, who will be a senior at Valor Christian when classes begin in August. I believe in giving back, the elder Del Rio said. I believe in this world being greater than yourself. Its not about any one person, I think. I could count thousands of people who have helped me along the way to make it. And its not about making it; its about life and the process. If so many people helped along the way, then it works.
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Dare to Play Soccer and Tennis Camps

Former world No. 1 tennis player Mats Wilander and training partner Cameron Lickle gave tips to kids with Down syndrome and their siblings as the Global Down Syndrome Foundation previewed its new Dare to Play Tennis Camp, which will launch in the summer of 2013.
See more at http:// bit.ly/YsIW3m
Global Down Syndrome Foundation Previews Dare to Play Tennis Camp
Oct. 30, 2012
Global Down Syndrome campers to take part in COL-SJ match

Oct. 4, 2012 For the past three weeks a group of aspiring soccer stars have been participating in the Global Down Syndromes Foundations Dare to Play Soccer Camps. The camps conclude on Saturday, Oct. 6, when the participants get to join the fun at Dicks Sporting Goods Park for the Colorado Rapids match against the San Jose Earthquakes. The Global Down Syndrome Foundation launched the Dare to Play Soccer Camp for individuals with Down syndrome in September of 2011 to provide an opportunity for males and females age 8 and up to learn the basics, camaraderie and joy of soccer from college and professional soccer players. Each camper is paired with a Regis University or Colorado Rapids soccer player for one-onone attention, assistance and fun. The Camp was inspired by the birth of Regis University Mens soccer coach Tony McCalls daughter, who happened to be
born with Down syndrome. McCall reached out to the Global Down Syndrome Foundation, citing Regis Universitys charter of giving back to the community, to create opportunities for people with Down syndrome to play soccer. The Dare to Play Soccer Camp has grown into a collaboration between McCall, Brian Crookham, Director of Operations for the Colorado Rapids Academy, and Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation with
valued support from adidas. Its important that we continue to provide opportunities for all kids who are interested in playing this sport, Crookham told ColoradoRapids.com. Its been a very rewarding venture for us over the past 18 months. Campers who participate get athletic instruction and support, and each camper receives a full soccer uniform, soccer ball, training T-shirt and ticket to a Rapids game. This years clinic that ends the three-week camp will be held on Saturday, Oct. 7, at Regis University from 3:30-4:30 p.m. Afterward, the campers will head to Dicks Sporting Goods Park to lead the starters of both the Rapids and Earthquakes onto the field and then show off their new soccer skills to Rapids fans during halftime.
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Outlet NBC 9NEWS 7 NEWS CBS4 FOX 31 Denver Entertainment Tonight Colorado and Company Comcast ABC 7 Washington DC FOX Washinton DC NBC Washington Telemundo Aurora Channel 8 Devil's Advocate Outlet 5280 Ability Magazine Ability Ability Magazine Aurora Sentinel Beverly Hills Courier Business Journal Capital Gazette Capitol File Chicago Tribune Colorado Expressions Confetti Dance Studio Life Fresno Bee In Touch MD NEWS New York Times People Reign The Denver Post The Examiner Washington The Georgetowner The Hill Urban Spectrum Villager Newspaper Washington Post Outlet Getty Images Capitol File Essence Examiner HuffPost Live In Touch Kontrol Magazine NBC Washington New York Times People StarPulse The Examiner Washingtonian Wonderwall Outlet KOA Colorado Public Radio ENTERCOMM Communication KOSI 101 KS107.5 TV Title Be Beautiful Be Yourself Coverage 2011 Be Beautiful Be Yourself Fashion Show Star-Studded Fashion Show Benefits Children With Down Syndrome Invididuals with Down Syndrome hit the grid iron with Ed McCaffery 2012 Be Beautiful Be Yourself Fashion Show Global Down Syndrome Event Rushin' Around with Tawnya Rush 2011 Global Down Syndrome Foundation Updates Bob Guiney to appear to Down syndrome fashion show Beverly Johnson on the Catwalk for a Cause Beverly Johnson on the Catwalk for a Cause Sie Center for Down Syndrome One Year Anniversary Dare to Play Tennis What is Down Syndrome? The Facts and Myths Explained Print Title Tiny Dancer Global Down Syndrome Foundation Featuring John C. McGinley, John J. Sie Global Down Syndrome - Things are Looking Up Quincy Jones Global Down Syndrome Foundation Featuring Quincy Jones, Michelle Whitten Crucial Questions Luke Zimmerman To Be Honored For His Advocacy For Those With Down Syndrome 2011 Be Beautiful Be Yourself Fashion Show Brings in More Than 1MM Program offers football, cheerleading for kids with Down syndrome Global Down Syndrome Foundation 2011 Gala and Fashion Show Down syndrome may hold key to new Alzheimer's treaments 2011 Be Beautiful Be Yourself Fashion Show "Shot in the Dark" 2012 ICON Awards The Joy of Movement Fresno boy an ambassador for Down Syndrome Supermodel Beverly Johnson's Mission to Redefine Beauty Sie Center for Down Syndrome One Year Anniversary A Father's Search for a Drug for Down Syndrome My Sister the Super Star- Jamie Foxx & His Sister DeOndra Hit Man Ed McCaffrey 's Dare to Play Football Camp Fomrer 'Bachelor' demures on sex questions Global Down Syndrome Fashion Show The Global Down's Syndrome Foundation Gala Stars Come Out at Be Beautiful Be Yourself Fashion Show Global Down Syndrome Foundation Washington Area Charity Events: Week of July 16 Online Title 2011 Be Beautiful Be Yourself Fashion Show Global Down Syndrome Foundation 2011 Gala and Fashion Show 5 Questions with Beverly Johnson on Her Reality Show & Being a Spokesperson for Down Syndrome Baby with Down syndrome leads major modeling campaign, breakers barriers The Ups of Down Syndrome Supermodel Beverly Johnson's Mission to Redefine Beauty Gladys Knight and Beverly Johson Perform Awareness About Down Syndrome Beverly Johnson on the Catwalk for a Cause A Father's Search for a Drug for Down Syndrome My Sister the Super Star- Jamie Foxx & His Sister DeOndra 2012 Be Beautiful Be Yourself Fashion Show Gladys Knight performs at Global Down Syndrome Foundation's Gala The Global Down Syndrome Foundation 2011 Gala & Fashion Show A week in Review Radio Title 2011 Be Beautiful Be Yourself Fashion Show Kids with Down Syndrome Learn to Dance Global Down Syndrome Foundation 2011 Be Beautiful Be Yourself Fashion Show The Global Down Syndrome Foundation
Impressions
Viewership 175,000 1,398,999 2,855,000 2,512,400 12,000,000 800,000 3,000,000 55,111 80,000 237,280 60,000
Circulation 85,000 165,000 1,000,000 165,000 8,600 15,380 110,000 50,000 1,200,000 65,000 30,000 66,000 923,279 4,500,000 11,000 4,784,000 38,000,000 35,000 7,630,262 1,414,000 40,000 166,000 25,000 6500 6,200,000 Unique Visitors 1,000,000 65,000 7,600,000 16,600,000 75,000,000 3,000,000 100,000 23,000 306,965,000 8,000,000 1,000,000 284,542 350,000 2,000,000 Listeners 176,000 360,000 1,400,000 721,000
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Fashion Show / Programs
Model for hope: Samantha Marcia Stevens
By Adam Goldstein Oct. 22, 2012 Brian and Kathryn Stevens wanted an explanation. It was 2006, Kathryn was pregnant and the couple had reported to a hospital near their home in Massachusetts for a checkup. It was the technicians initial reaction to the images that caused both to worry, and it was the doctors subsequent explanation that caused both to fume. She dropped what she had already printed out and ran out the room. Shed said, Im sorry, I have to go get the doctor. Thats not really good bedside manner, Brian Stevens recalled. The doctor came in and (said), From the curve of the pinky bone and femur bone, its very likely that the baby is going to have Down syndrome. Would you like to set up
a time to terminate? I actually kept cool. I asked to talk to someone else. The Stevenses didnt listen to much of the advice or predictions that came after the birth of Samantha Marcia Stevens, who was born with Down syndrome. They said it was unlikely Samantha would ever walk. They said it was doubtful that shed ever talk. Six years later, Brian and Kathryn Stevens were in Denver with Samantha and her older sister, Crystal Novitch, to show just how much their daughter has defied the odds and progressed. Samantha Stevens came to Colorado as an honored guest, having earned the role of the 2012 Global Down Syndrome Ambassador for the 2012 Be Beautiful Be Yourself Fashion Show. The annual fundraising event that benefits the Linda Crnic Institute for Down Syndrome centered at the Childrens Hospital Colorado in Aurora drew plenty of big names this year, including music icon Quincy Jones, actor Jamie Foxx and pop singer Natasha Bedingfield. Read more at http://bit.ly/V1WrsP
Dec. 21, 2012
Ballet puts a little spin on Nutcracker

The Colorado Ballet welcomed Eliza Richard and Schuyler Kropp from the Global Down Syndrome Foundations Be Beautiful Be Yourself Dance Class to be on stage for The Nutcracker.
Oct. 19, 2012 The Global Down Syndrome Foundations 2012 Be Beautiful Be Yourself Fashion Show raised more than $1.5 million on Oct. 13 at the Sheraton Downtown Denver Hotel. It benefits the Linda Crnic Institute for Down Syndrome at the Anschutz Medical Campus in Aurora, providing funding for research, medical care, education and advocacy for those with Down syndrome. Among the many sponsors were the Anna and John J. Sie Foundation, McDonnell Family Foundation, Hyde Park Jewelers, Sturm Family Foundation, MDC/Richmond American Homes Foundation, Denver Broncos, Dish Network, Land Title Guarantee Co., Perky Jerky, SomaLogic, Steele Street Bank & Trust and the University of Denver.
Event raises $1.5M for Crnic Institute
See more at http:// bit.ly/XYvK77
3300 E. First Ave., Suite 390 Denver, CO 80206 303-321-6277 www.globaldownsyndrome.org www.BeBeautifulBeYourself.org
The Global Down Syndrome Foundation is a public nonprofit 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 has the primary focus of supporting the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. 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 shortterm goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show -- the single-largest annual fundraiser benefiting people with Down syndrome. The Foundation organizes and funds many programs and conferences, including the Denver Broncos Cheerleaders Dare to Cheer Camps, the Dare to Play Soccer Camps, the Global Down Syndrome Educational Series, and the Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention. Tax Exempt # 26-4431001
28

2012 Global Down Syndrome Foundation Press Clippings

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2012 Global Down Syndrome Foundation Press Clippings

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2012 Press Clippings

Be Beautiful Be Yourself Fashion Show

Global Down Syndrome Foundation

John Malone contributes $100,000 to Global Down Syndrome Foundation

2012 Press Clippings

Be Beautiful Be Yourself Fashion Show

Dare to Play Football and Cheer Camps

Global Down Syndrome Foundation

Shanahan, Billick coach event for kids with Down syndrome

2012 Press Clippings

Dare to Play Football and Cheer Camps

Shanahan works for Down syndrome

Be Beautiful Be Yourself DC Kickoff

Global Down Syndrome Foundation

Fashion show brings in $100K

July 20, 2012

July 17, 2012

About the Global Down Syndrome Foundation

2012 Press Clippings

Be Beautiful Be Yourself DC Kickoff

Bob Guiney to appear at Down syndrome fashion show

July 19, 2012

Global Down Syndrome Foundation fashion show

Sarah Brown, Helena Brown and Anna Brown

Scott Grimes and Fummi Agbebi

Jenny Stouer and Marilyn Tolbert

Mark Fogle and Karen Feketis

Alzheimers Disease Research

Global Down Syndrome Foundation

Renowned scientist joins CUs Alzheimers Research, Care Team

Read more at http://bit.ly/XD6Eub

Hope for Alzheimers patients

Down syndrome may hold key to new Alzheimers treatments

2012 Press Clippings

Alzheimers Disease Research

Read more at http://yhoo.it/YK2EpO

Be Beautiful Be Yourself Fashion Show

Global Down Syndrome Foundation

Brooke Griese and Leslie & Bill Vollbracht

DeOndra Dixon and George Dixon

Quincy Jones and Larry Mizel

Greg Karsh and Peter Kudla

Natasha Bedingfield, Sophia Whitten and Tom Whitten

Debbi Alpert and Ricki Rest

Brian & Samantha Stevens

2012 Press Clippings

Be Beautiful Be Yourself Fashion Show

Tom & Michelle Whitten

Greg Karsh and Brett Perry

Inge Wefes & Huntington Potter

Kristi Fote, Ellie Atkeson and Jesse Schroffel

Briana Carey and Broncos Cheerleader Kara

Candy Ergen, Anna Sie and Sharon Magness Blake

John J. Sie, Quincy Jones and Anna Sie

Mort & Edie Marks

Ashley Wolf, Elaine Wolf and Sandy Wolf

Ross Wilkins and Pat McDonnell

Casey & Brett Perry

Be Beautiful Be Yourself Fashion Show

Global Down Syndrome Foundation

2012 Press Clippings

Be Beautiful Be Yourself DC Kickoff

Be Beautiful Be Yourself DC Kickoff

Global Down Syndrome Foundation