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

DENVER (July 11, 2012) – 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 Foundation
The 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.

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Renowned Scientist to Galvanize Alzheimer’s Research and Clinical Care

Huntington Potter joins the Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus

AURORA, Colo. (July 10, 2012) – Renowned scientist, Huntington Potter, MD, will galvanize Alzheimer’s 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 Medicine’s 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 Alzheimer’s disease and Down syndrome arise and research drugs that could ameliorate or prevent Alzheimer’s disease. He also will begin the process of building an Alzheimer’s 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 Alzheimer’s disease and Down syndrome. His seminal research led to the discovery of triplication of chromosome 21 in many cells of patients with Alzheimer’s disease, leading Potter to postulate that people with Alzheimer’s 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 Alzheimer's 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 Alzheimer’s disease.

“I’m excited to be part of the Crnic Institute and the Department of Neurology here on the Anschutz Medical Campus,” said Potter. “Alzheimer’s 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 Alzheimer’s 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. Potter’s hire underscores how providing research funds benefitting people with Down syndrome can also benefit tens of millions suffering from diseases such as Alzheimer’s, 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 Alzheimer’s disease.”

“We are excited that Dr. Potter has chosen to join the University of Colorado School of Medicine to develop our new program in Alzheimer’s disease,” said Kenneth L. Tyler, MD, Reuler-Lewin Family Professor and chairman of the Department of Neurology. “He brings a commitment to improving the understanding of this disorder and the care for individuals at risk for Alzheimer’s disease. His presence at the University of Colorado Anschutz Medical Campus significantly enhances our presence in this critically important area, and sets the stage for development of an Alzheimer’s Disease Research Center at the CU School of Medicine.”

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 people with Down syndrome are being diagnosed with the early onset of Alzheimer’s disease.

Current research estimates all people with Down syndrome will have the brain pathology of Alzheimer’s 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 dollars to establish the Crnic Institute as the worldwide beacon for research and care related to Down syndrome.

“Alzheimer’s disease is an immense and increasing problem across the population, and particularly for adults with Down syndrome,” said John J. Sie. “The appointment of Hunt Potter demonstrates that the Crnic Institute is engaged in research that will change the outcome for these individuals.”

Prior to joining the Crnic Institute, Potter studied, researched and taught for 30 years at Harvard University. He received his AB Cum Laude in Physics and Chemistry and his MA and PhD in Biochemistry and Molecular Biology before spending 13 years on the faculty of the Neurobiology Department. In 1998, he joined the Faculty at the University of South Florida (USF) as the Eric Pfeiffer Chair for Research on Alzheimer’s Disease. He designed and directed the NIA-designated Florida Alzheimer’s Disease Research Center at USF and was elected President of the Faculty at the College of Medicine, and President of the USF Tampa Faculty Senate. From 2004-2008, Potter was CEO and Scientific Director of the Johnnie B. Byrd Sr. Alzheimer’s Center & Research Institute, during which time the Institute built the largest free-standing Alzheimer’s disease research institute in the world and developed seven new treatments for Alzheimer’s disease in preparation for human trials.

Potter is credited with the first demonstration of the Holliday intermediate in genetic recombination, the perfection of electroporation for gene transfer, and the discovery of the essential role of inflammation and the amyloid-promoting activity of the apoE-4 protein in Alzheimer's disease. He is the author of more than 100 scientific articles and books, is the holder of 15 U.S. and foreign patents, has sat on scientific advisory and review committees in academia, industry and government, and has received numerous awards for his work. In 2010, Potter was elected a Fellow of the American Association for the Advancement of Science. His electron micrographs of DNA are on permanent exhibit in the National American History Museum of the Smithsonian Institute in Washington D.C.

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 Foundation

The 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.

###

Letter from Tom Blumenthal, Executive Director at Linda Crnic Institute for Down Syndrome

I thought I would take a few moments to introduce myself.  I have recently assumed the position of Executive Director of the Linda Crnic Institute for Down Syndrome having just completed a second term as Chair of Molecular, Cellular and Developmental Biology at the University of Colorado, Boulder.  Before I came to Boulder, I was Chair of Biochemistry and Molecular Genetics at the University of Colorado Health Sciences Center for eight years, and before that Chair of Biological Sciences at Indiana University, Bloomington, for many years. 

I have spent my entire scientific career so far doing basic research, primarily on various aspects of gene expression and on the arrangement of genes on chromosomes.  Indeed, my lab in Boulder is currently studying various aspects of RNA synthesis and will continue to do so during my tenure as Executive Director of the Crnic Institute.  So while I’m no stranger to either academic administration in general or to the Health Sciences Center in particular, I am new to studying Down syndrome.    However, I believe I am in a unique position to lead the Crnic Institute in its effort to eradicate the medical and cognitive ill effects associated with Down syndrome.

Let me tell you a bit about my vision for research at the Crnic Institute and the direction in which I plan to take it.  Currently the Crnic Institute is housed on the fourth floor of Research Complex II on the Anschutz Medical Campus. While a minimal level of science is currently occurring in that space, that situation will not last much longer. First, Professor Huntington Potter has very recently moved his lab into Crnic Institute space. Hunt, a specialist in Alzheimer’s disease, will be a member of the Department of Neurology and part of the Crnic Institute scientific team.  Second, we already have one of the world’s foremost investigators who studies Down syndrome in the Department of Pediatrics here at the School of Medicine, Katheleen Gardiner.  Her lab will be moving into the Crnic Institute space. In addition I hope to recruit one additional Down Syndrome Researcher from another university into the Crnic Institute space, and I will initiate additional Down syndrome projects there as well.  That should rapidly fill up our space.

In addition to the investigators performing their research in the Crnic Institute itself, I plan to dramatically increase the amount of research on Down Syndrome being performed at the University of Colorado, at both the Denver and Boulder campuses, by initiating a grants program. The Scientific Advisory Board of the Crnic Institute will issue a series of Grand Challenges, requests for proposals from researchers in Colorado who are interested in working on key issues on the causes of Down syndrome or in developing therapies to ameliorate the ill effects, especially medical and cognitive deficits.  Furthermore, I believe the research benefitting people with Down syndrome has the potential to make very significant contributions to our understanding of associated diseases, including Alzheimer’s disease, cancer and heart disease.  Once I looked into it, I was surprised to learn the incidence of solid tumors is much lower in people with Down syndrome.  Can we take advantage of that observation to learn something important about causes of solid tumors?  Thus, it is my hope we can make important contributions in understanding Down syndrome itself. But wouldn’t it be wonderful if we could also make important contributions to our understanding of some of these associated issues by studying Down syndrome? 

I, personally, have always been interested in how genes are correctly regulated.  There are at least 20,000 genes in the human genome, each of which must be turned on and turned off very precisely at particular times in particular tissues and in particular cells.  It is absolutely amazing that this can occur without errors in virtually all people, especially during development from a fertilized egg into a human being.  This occurs at least in part by precise timing of activity of hundreds of regulatory proteins. In Down syndrome around 300 of the 20,000 genes, those on chromosome 21, are present in three copies instead of the usual two, and some of these 300 genes encode regulatory proteins.  So it is not at all surprising that development of people with Down syndrome is different.  It is my hope by targeting our studies into certain areas of research, we can learn a lot about which genes are important in the occurrence of which medical and cognitive ill effects, and indeed we may learn a lot about basic mechanisms of gene regulation by studying, in people and in mouse model systems, what exactly is mis-regulated and why.

Why now?  There is a lot of talent at both the Anschutz Medical Campus and in Boulder, investigators who are capable of making real contributions in these areas.  Given the current tight federal funding situation, these investigators might be interested in performing Down syndrome-related research projects.  I expect we can get talented scientists really excited about doing so.  But perhaps even more important, the development of new technologies in recent years, especially in the fields of genomics and proteomics make entirely novel approaches to our key questions possible.

My plan is to use much of the funds available in the Crnic Institute to provide opportunities for researchers to initiate new research into the causes of Down syndrome as well as ways to benefit people with Down syndrome.  While these investigators will remain in their current research space, both at the Anschutz Medical Campus and in Boulder, they will become members of the Crnic Institute (in addition to their current affiliations) and will attend monthly scientific meetings with all Crnic Institute members.  I expect getting all of this talent together frequently will allow all of us to make rapid progress on our projects.

The avowed purposes of the Crnic Institute are to “eradicate the medical and cognitive ill effects associated with Down syndrome by the year 2017” and “to significantly improve the lives of all people with DS and their families and their communities.”  My intention is to accomplish those goals.  However, when exploring the unknown, you never know what you’ll find.  Explorers can’t really ever promise anything.  All we can promise is that we’ll do everything we can, that we’ll leave no stone unturned, and that everything we do will be directed at accomplishing that mission.

I believe it is time for research to finally start benefitting people with Down syndrome and as outlined above there is reason to be confident we can accomplish this.  I hope others will join the Crnic Institute in support of this mission.

Tom Blumenthal takes the reigns of Linda Crnic Institute for Down Syndrome

Renowned Scientist, Tom Blumenthal, takes the helm of

Linda Crnic Institute for Down Syndrome

DENVER (July 2, 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, Anschutz Medical Campus.

Dr. 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 to his new role.

“Morally I believe we are obligated to help people through scientific study.  Scientifically I am intrigued with the Crnic Institute’s mission to eradicate the medical and cognitive ill effects associated with Down syndrome,” said Blumenthal. “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.”

Dr. Blumenthal is no stranger to the Crnic Institute’s mission. From its inception he has served on the Crnic Institute’s Scientific Advisory Board and for the past year on the Board of Directors.

“We are excited about the leadership, scientific knowledge, professionalism and passion Dr. Blumenthal brings to the Crnic Institute,” said John J. Sie, co-trustee 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 benefitting people with Down syndrome.”

Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation, which provides fundraising, education, awareness and government advocacy for the Crnic Institute agrees. “Dr. Blumenthal has already started major research initiatives that we can galvanize our community around, fundraise for and educate society about. We couldn’t be more excited.”

Lilly Marks, a Crnic Institute Board of Directors Member, Vice President for Health Affairs University of Colorado and Executive Vice Chancellor of the Anschutz Medical Campus welcomes her distinguished colleague. “Tom’s deep network of scientific colleagues on both campuses puts him in a unique position to galvanize research benefitting people with Down syndrome. He has the scientific leadership that is important for a multidisciplinary, multi-campus effort to ameliorate the adverse effects of Down syndrome.”

Dr. Blumenthal served as two-term Chair for the Department of Molecular, Cellular and Developmental Biology at University of Colorado Boulder. Prior to that he was the Chair of Biochemistry and Molecular Genetics at the University of Colorado Health Sciences Center for eight years, and before that Chair of Biological Sciences at Indiana University, Bloomington, for many years. 

Dr. Blumenthal earned his undergraduate degree in Biology at Antioch College in 1966. He was a National Science Foundation fellow during his graduate work at Johns Hopkins University, from which he received his PhD in Genetics in 1970. He was awarded the Helen Hay Whitney Foundation Postdoctoral Fellowship, which he completed at Harvard University’s Department of Biochemistry and Molecular Biology in 1973. Dr. Blumenthal is the author of more than 100 scholarly articles and one book, and currently sits on the editorial boards of the journals RNA, Molecular and Cellular Biology, Transcription and Worm, in addition to the online book, Wormbook.

He has served on the Board of Directors of the American Medical and Graduate Departments of Biochemistry, the American Society of Biochemistry and Molecular Biology, the RNA Society and the Scientific Advisory Board of Wormbase, the C. elegans database. He also served as a member of the University of California Science and Technology Committee and the Scientific Advisory Boards of the Biological Science Divisions of the Los Alamos and Lawrence Livermore National Laboratories. He was elected to membership in the American Academy of Arts and Sciences in 2010.

Dr. Blumenthal’s research in the area of gene expression concentrates on mechanisms of pre-mRNA processing in C. elegans and how that relates to organization of genes on chromosomes. Dr. Blumenthal’s work with the C. elegans model system even has possibly significant implications for understanding Down syndrome, despite its seemingly distinct focus. Dr. Blumenthal emphasizes that, “We do not currently understand how an extra copy of chromosome 21 results in all the many effects seen in people with Down syndrome, but dramatic changes in gene expression may be the most likely explanation.” Dr. Blumenthal is excited to have the opportunity to facilitate putting together research teams to test ideas like this both to understand the causes of, and the benefit to those who have, Down syndrome.

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 Foundation

The 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. 

World Down Syndrome Day at Children's Hospital Colorado

Please watch an interview with Director of Education of Linda Crnic Institute for Down Syndrome Patti McVay

Aurora 8 - World Down Syndrome Day with Patti McVay

 FIRST Annual Crnic Institute World Down Syndrome Day Essay Contest for Middle School and High School Students WINNERS!

WINNERS: Kia and Brittany, Collaborative Middle School 

- 2 Friends - One with Down syndrome & one without

LCI Director of Education Patti McVay

 & LCI Jenny Weaver stand with essay

winners Kia and Brittany

We Are Special

When a child has Down Syndrome,simple tasks and conversations can become very hard, but understanding we are both equal has made it so that our friendship is so special. 

My name is Brittany and I am an eighth grader at Campus Middle School. During this school year, I have been spending my elective period in the special needs classroom as a student assistant. 

This is where I met Kia, a 6th grader with Down Syndrome. When my principal suggested that Kia and I enter this contest, I was surprised. I never had really thought about how our friendship was different because of Down Syndrome.  Kia and I have been eating lunch together two days a week for over a month, discussing our friendship. During this time we have discovered that one's friends are not chosen because they are the prettiest, the smartest or the most popular. one choses their friends because of how that person makes one feel. Kia makes me feel special and I make her feel wanted. Kia is a very genuine person, she smiles when she's happy and lets you know that you have brightened her day just by being there. I do not have to impress Kia. I just have to be me. Every time I see Kia, she smiles and tells me how special I am to her. There is no drama with Kia, she tells you straight up how it is going to be and that is that. 

As our conversations during lunch have progressed, we have discovered that we have common interests. We both think boys have cooties and they are not worth our time yet. Though we do enjoy dreaming of our wedding day and all the fine details. One day at lunch, Kia said that even though we have less time together, unlike most friends, we make our time together special. 

When Kia and I are together we do not worry about the trivial aspects of being teenagers. Such as the latest school gossip, what drama happened in class that day or who is going out on a date. Kia and I enjoy the calmness of our relationship. It is simple, really, we just enjoy each other for who we are and what we each give to the friendship. We give each other a purpose and a meaning to our everyday school routine. 

So, the question remains, how does Down Syndrome make our friendship better? Kia and I are friends not because of Down Syndrome, but because we have learned to look beyond daily challenges and discover who the person is beneath the skin. Down Syndrome may have been the beginning to our relationship but we choose to be friends because of who we are without the drama of being a teenager. Down Syndrome not only changed our relationship but taught us a valuable life lesson in acceptance.

                                                                                                                                                 

WINNER: Kayla, Individual Student without Down syndrome

Essay Winner Kayla shares a moment with Danny

Misunderstood Abilities

On November 23'd of 1999 a beautiful baby brother named Danny came into my life. I
was ecstatic to see him wiggle his tiny toes and open his big blue eyes for the first time. Three
days later, however, I was told something was wrong with my beautiful baby brother. "Down
Syndrome," they called it, "Special needs." Immediately I thought: wow, Danny is special! He's
even more perfect then I thought. But the world told me I was confused. Danny was speCial, but not in a good way. He has disabilities. I told the world it was confused. Danny was special, in an amazing way. He has abilities they will never be able to understand. But, of course, I was too little to fully grasp the situation and nobody would listen to me. So, here I am, 12 years later,
with a philosophy unchanged. Disabilities do not exist, only abilities that are misunderstood;
this I believe. 

How does society define which needs are special or what abilities are normal to have? I
myself have different needs and abilities than anyone else in the world and so does my brother.
Perhaps Danny can't tie his shoes, fix his own meals, or perform other simple daily tasks. But,
people are not remembered or known for how well they perform simple daily tasks. Danny
shouldn't be either. 

As Danny grew and I grew too I noticed he was different then most kids his age.
However, these differences go deeper then what you might expect. I remember eating
popsicles on a warm summer day with my brother. When I dropped it, being around six years
old, I burst into hysterical sobs. Danny reached up to my face, wiped away my tears, and
handed me his popsicle with a smile. "Share," he told me. I knew in my heart he would react
the same way with a stranger. Years later we took a family vacation to the Jersey Shore. We
soon realized that Danny was terribly afraid of the ocean and much rather play in the sand, far
away from the water. One day while at the beach I was playing in the water with another little
girl. Suddenly, the waves doubled in height and began to knock us over. Danny fought his fears
and rushed to our aid, pulling us out of danger. This was both a mental and physical challenge
for him but he didn't even hesitate. If his ability to love, care, and protect in such a pure
manner is a disability then I've learned the definition wrong. 

We all take pride in believing that we are all different. My beautiful baby brother is
different too and I hope that every day of his life he takes pride in that. I hope he reaches every
goal, no matter how high or low. I hope he always smiles, wipes away tears, and says "Share." I
hope he continues to annihilate his fears. Most of all, I hope that he always remembers he does
not have disabilities but immeasurable abilities, perhaps abilities we could learn from. Annie
Forts, a woman with Down Syndrome once said, "Don't ever prejudge the limits of our
abilities. We definitely will surprise you and sometimes we even surprise ourselves!" I
believe that Annie Forts was entirely correct.

United Nations World Down Syndrome Day Conference

Dianne Richler, President
of Inclusion International
 & Michelle Sie Whitten

Dr. Jose Flores, Actor &
 Self - Advocate Chris Burke
& Michelle Sie Whitten

                         

Dr. Dennis McGuire, Dr. Brian Chicoine, 
& Linda Crnic Institute Executive Director Ed McCabe

Self - Advocates at the UN Conference

UN Conference Participants 

Self Advocates Ryan & Kayla 

Self - Advocate presenting at 
UN World Down Syndrome Day Conference

Panel of Speakers

Self- Advocate presenting at
UN World Down Syndrome Day Conference

  

DENVER and NEW YORK – On March 21, 2012, the Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome spoke at the first United Nations’ Down Syndrome Conference. The conference will commemorate the UN’s resolution to recognize March 21^st as the official “World Down Syndrome Day” in 191 countries. World renowned speakers from several countries including Brazil, the United Kingdom, Indonesia and Peru have been invited to speak.

Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation, will kick-off the panel of speakers addressing “The Power of Media – A Guide to Working with the Media to Promote Inclusion.” Whitten’s foundation has been successful in attracting celebrities such as Quincy Jones, Jamie Foxx, John C. McGinley, Beverly Johnson and Jeff Probst to the Down syndrome cause while equally promoting self-advocate celebrities and Ambassadors such as DeOndra Dixon, Karen Gaffney, Sujeet Desai and Alex Sessions.

To watch Michelle Sie Whitten's presentation at the United Nations Down Syndrome Conference, please click on the link below. Michelle's presentation starts at 1hr and 50 minutes.

United Nations Down Syndrome Conference Video

To see Michelle Sie Whitten's presentation at the United Nations Down Syndrome Conference please click on the link below.For any questions please contact the Global Down Syndrome Foundation at info@globaldownsyndrome.org

The Power of Media

The Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome are proud to stand with partners including UNICEF, Special Olympics and Down Syndrome International to commemorate the contributions and inherent value of people with Down syndrome at this first-of-its-kind event.

About World Down Syndrome Day

World Down Syndrome Day was established by Down Syndrome International in 2006 and has been observed in more than 60 countries worldwide to date. It is held on 21 March (3/21) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes the genetic condition. The aim of the day is to raise awareness and understanding about Down syndrome, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.

A resolution to designate 3/21 as “World Down Syndrome Day”, to be observed every year beginning in 2012, was adopted by consensus by the United Nations General Assembly in December 2011. The resolution was proposed and promoted by Brazil, and co-sponsored by 78 UN Member States. From 2012 onwards, the date will be celebrated by all 192 UN countries.

Join our global voices by participating in our global virtual account of how people with Down syndrome have greatly impacted our lives. We encourage YOU to post you personal stories showcasing individuals with Down syndrome and their accomplishments. Below I have shared with you the tremendous accomplishments of self-advocates that have touched my life dearly.

DeOndra Dixon

When DeOndra Dixon was born in 1984 there were not many services or early intervention available for children with Down syndrome. But with the loving guidance of her mother and father, George and Annette Dixon, her big brother, her sister, and a grandmother with unwavering faith, DeOndra Dixon has created a well-balanced and meaningful life for herself beyond what many could have expected over 27 years ago.

DeOndra lives in Westlake, California and continues her education at Tierra Del Sol Foundation School. Every morning she is up with her father, Mr. George Dixon, getting on the bus for the long trek to school where she also has a job in the school cafeteria. DeOndra is very proud of her job and is excited to receive her paycheck every two weeks.

DeOndra has won several medals in the Special Olympic Games including in shot put, track and field, bowling and soccer. She is the recipient of a school-wide poetry award and the 2009 Quincy Jones Exceptional Advocacy Award.

In September of 2010, DeOndra made her first trip to Washington D.C. to advocate on behalf of people with Down syndrome and to call special attention to African Americans with Down syndrome. She met with many important representatives including Kareem Dale, Associate Director of the White House Office of Public Engagement & Special Assistant to the President for Disability. And she presented Congressman Patrick Kennedy with the Quincy Jones Exceptional Advocacy Award.

In 2011, DeOndra became the Global Down Syndrome Foundation’s Ambassador and traveled to San Antonio to represent the Foundation at the National Down Syndrome Congress convention. DeOndra Dixon is the 2011 Ambassador and beautiful runway model.

2011 Ambassador DeOndra Dixon

Karen Gaffney

From the moment she was born, Karen Gaffney began an incredible journey that continues today. Karen is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities.

Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a two-year Associates of Science degree from Portland Community College. She successfully swam the English Channel as part of a six-person relay team. And two years ago, she accomplished her biggest swimming challenge yet - she swam 9-miles across Lake Tahoe in 59-degree water to show the world that people with Down Syndrome are more alike, rather than different, from everyone else.

Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed. In 2010 Karen received the Global Down Syndrome Foundation’s Quincy Jones Exceptional Advocacy Award.

Sujeet Desai

Sujeet Desai is an accomplished musician born with Down syndrome. Sujeet has mastered seven instruments: Bb and Bass clarinet, Alto Saxophone, Violin, Piano, trumpet, and drums. In June 2001, he graduated from High School with honors and in May 2003, he graduated from the Berkshire Hills Music Academy in Massachusetts after a two-year residential post-secondary study in Music and Human Services.

After graduation, Sujeet worked as a teacher's aide for an elementary school music department and continues to introduce music to audiences though his volunteer work. Currently, he performs in community churches, nursing homes, senior centers and hospitals bringing his art to those away from home and family.

Sujeet received such an overwhelming response from his musical performances that he decided to make music his career. Since March 2000, he has performed in over 40 states and 13 countries and is booked through 2012. Sujeet is a recipient of numerous National and International awards for his music and self-advocacy. Those awards include an Achievement Award on United Nations International Day of Disabled Persons, World Down Syndrome Day Award from Down Syndrome International, Thank You Award from Special Needs Families Developmental Center in Dubai, and the Global Down Syndrome Foundation’s Quincy Jones Exceptional Advocacy Award.

Sujeet, who lives independently, excels at a number of interests. He holds a 2nd degree Black Belt in martial arts (Tae Kwon Do), won gold & silver medals in the 1999 Special Olympics World Games in swimming and has received numerous other Special Olympics medals in skiing, cross-country running and bowling. He enjoys writing emails to his fans who visit his web site from all over the world.

Sujeet’s amazing story has been highlighted in two documentaries and many TV and newspaper interviews. He has been featured in the Wall Street Journal and Time Magazine, as well as on TV shows including The View, 20/20 and the Oprah Winfrey Show.

Sujeet has worked hard to become the finest musician he can be, while also working to overcome the limitations of his disability. Music has helped him bridge this gap. With his musical versatility, Sujeet is a role model who brings inspiration and hope to individuals with disabilities, their parents, and educators. Sujeet's mission is to send a message across the world that, given the proper opportunities, individuals with disabilities can “Make it Happen!”

Alex Sessions

Alexander Gregory Sessions was born January 19, 1994 in Dallas, Texas. Alex was born with Down syndrome. His parents were very happy when he was born – his brother Bill was 4 and they always wanted two boys. They did not know much about Down syndrome, but soon started educating themselves to make sure they did all they could to help Alex reach his intellectual and physical potential.

It was not always easy for them to find resources. His mom became involved with the Down Syndrome Guild and his dad became involved in research and support for people with Down syndrome at a national level as a Member of Congress.

Like many young children with Down syndrome, Alex was diagnosed with Hirschsprung’s disease, which causes intestinal blockage. He was only 9 months old. It took 4 months for my intestines to heal and then needed another major operation. Although Alex have a large scar on my stomach, he healed and has a wonderful life.

Alex is a typical teenager. He loves hanging out with his big brother Bill and his friends. Alex plays sports a lot and excels at football, track, basketball and swimming. Alex has won Special Olympics medals in swimming, basketball and track.

Ever since Alex was little, he wanted to join the family tradition of being a Boy Scout and Eagle Scout just like his brother bill, dad and grandfather. After working very hard over six summers, in November of 2010 Alex received my Eagle Scout having earned 32 merit badges and completed a service project at White Rock Lake. Alex is a Brotherhood Member of the Order of the Arrow. Being an Eagle Scout has taught him never to give up, to work hard, and has allowed his friends and community to understand that we are more alike than different. It has taught Alex many life skills including the importance of helping others.

Alex also likes giving the prayer before each meal, so much that my parents call me the “Reverend Sessions!” He attends high school at the Notre Dame School of Dallas. When Alex finishes high school, he would like to become a public speaker, coach or a work in law enforcement. Alex would make a great policeman because he is good at helping people.

In 2011, Alex became the Global Down Syndrome Foundation’s Ambassador and was honored at the inaugural Be Beautiful Be Yourself Global Down Syndrome Foundation Gala in Washington DC.

2011 Ambassador Alex Sessions

2011 National Institutes of Health Report Shows Down Syndrome Remains the Least Funded Genetic Condition

http://report.nih.gov/rcdc/categories/ProjectSearch.aspx?FY=2011&ARRA=N&DCat=Down Syndrome

DOWN SYNDROME ORGANIZATIONS EXPRESS DISSAPOINTMENT IN FEDERAL FUNDING DECREASE FOR PEOPLE WITH DOWN SYNDROME

Dear Colleagues and Friends ,
We are disappointed to let you know that the National Institutes of Health (NIH) funding levels for research supporting people with Down syndrome actually decreased from $22 million in 2010 to $20 million in 2011. 

The good news is Global Down Syndrome Foundation and the two national organizations – National Down Syndrome Congress and National Down Syndrome Society – are clearly on the same page to use this to redouble JOINT efforts to significantly increase research and medical care funding for people with Down syndrome.

We are organizing a call to action and will keep you posted!

Best,

Michelle Sie Whitten

DOWN SYNDROME ORGANIZATIONS EXPRESS DISSAPOINTMENT IN FEDERAL FUNDING DECREASE FOR PEOPLE WITH DOWN SYNDROME

2011 National Institutes of Health Report Shows Down Syndrome Remains the Least Funded Genetic Condition

Denver, Atlanta, New York-- On Monday, February 13, 2012 the National Institutes of Health (NIH) published the fiscal year 2011 research funding for Down syndrome. The funding numbers decreased from $22 million in 2010 to $20 million in 2011 out of a total $31 billion budget. The 2010 funding levels already equated to Down syndrome being the least funded genetic condition by the NIH, something many Down syndrome organizations have been trying to reverse.

In a joint statement by the National Down Syndrome Congress, National Down Syndrome Society and Global Down Syndrome Foundation, the Down syndrome community expressed its disappointment in the decrease.

We are very disappointed the funding levels for research from the NIH have not increased, but in fact decreased. Prominent scientists believe the research for improving health and cognition is extremely promising.

The Down syndrome community feels strongly about better medical care and outcomes for people with Down syndrome. Mainstream Americans overwhelmingly support federal funding for Down syndrome, as evidenced by a 2011 poll.

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, as evidenced by numbers published by the NIH.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, childhood leukemia, thyroid conditions, and Alzheimer's disease. Researchers are studying proteins related to human chromosome 21 and Alzheimer’s disease that would reduce the level of the protein and lead to improvements in cognition for individuals with Down syndrome. While these groundbreaking developments, supported primarily by private funding, are positive achievements, both government funding and clinical research infrastructure support are vital to our efforts to translate research achievements into real treatments and therapies.

We hope given these realities that research funding benefiting the lives of people with Down syndrome will increase at the NIH. We are grateful for the funding that has been provided so far and will continue to collaborate with the NIH in meeting our collective goals for increased funding.

About the National Down Syndrome Congress

Founded in 1973, the National Down Syndrome Congress is the country’s oldest organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.

About National Down Syndrome Society

The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national advocate for the value, acceptance, and inclusion of people with Down syndrome. We demonstrate this commitment through our advocacy and public awareness initiatives that benefit people with Down syndrome and their families.

About the Global Down Syndrome Foundation

The 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.

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