![\"\"](\"http:\/\/www.globaldownsyndrome.org\/wp-content\/uploads\/2011\/08\/Anna-and-John-J.-Sie.jpg\" "\\"Anna")
<\/em><\/p>\n\u201cI want to make sure our granddaughter will benefit from anything we do. But that can\u2019t happen if we don\u2019t get to the bottom of these health issues for all people with Down syndrome. Helping my granddaughter, and the millions of others like her, is my mission and my passion in life.\u201d<\/em><\/strong> \u2013 Anna Sie<\/strong><\/p>\n John J. Sie \u2013 Grandfather (Ye Ye in Chinese)<\/em><\/p>\n \u201cEradicate is a harsh word. But it draws attention to what I mean \u2013 finding a conclusive solution. The goal is after 2017, the serious medical issues and cognition deficits for people with Down syndrome will be no more.\u201d<\/em><\/strong> \u2013 John J. Sie<\/strong><\/p>\n Anna and John J. Sie have a very different view on almost everything. \u201cIt goes beyond just being a man or woman, Chinese or Italian. We are sort of the epitome of \u2018opposites attract\u2019,\u201d says John with a chuckle, about his marriage to Anna.<\/p>\n But there was one thing that Anna and John did see the same and that was the future of their granddaughter, who happens to have Down syndrome. When Anna and John\u2019s daughter, Michelle, got her amnio<\/em> results and broke the news to them that their granddaughter would have Down syndrome, it was like a revelation.<\/p>\n \u201cOf course we were shocked at first, but it was as if the diagnosis itself instantly made us better people,\u201d says Anna, who emigrated from Italy in the \u201850s with her father and brothers, settling in New Jersey. \u201cWe were in total agreement \u2013 we were going to love and nurture this baby no matter what.\u201d<\/p>\n \u201cAnd emotionally we had both been there. Being immigrants from Italy and China respectively and not speaking English, we were made fun of, people treated us differently, and life was quite challenging,\u201d describes Anna. \u201cThis is not what we wanted for our granddaughter.\u201d<\/p>\n \u201cBecause of our granddaughter we have a passion to help all people with Down syndrome,\u201d says Anna (\u201cNonna\u201d to her grandchildren). \u201cThis has become our life\u2019s mission. We want the best for our granddaughter, but just as passionately, we want the best for all people with Down syndrome, young and old. As my husband says, from cradle to grave.\u201d<\/span><\/p>\n Wanting to support their daughter and son-in-law during their first child\u2019s impending birth, the newly retired couple learned everything they could about the syndrome. \u201cUnlike most families, we had an early diagnosis for our granddaughter,\u201d says Anna. \u201cSo we had time to learn about it.\u201d<\/p>\n But there wasn\u2019t much information available about research, medical best practices or what was possible over the next horizon. What was the dream for our children? There were a lot of facts but few answers and many contradictions. The family was informed that Down syndrome is the \u201cCadillac\u201d of disabilities, they were lucky their granddaughter was born in this century, and they should embrace a better future by helping to change society\u2019s view of the disabled.<\/p>\n Because of his engineering mindset and entrepreneur\u2019s optimism, John listened to the experts at hand, and then set his own course. \u201cThroughout my life I have endeavored to see what was possible, regardless of conventional wisdom,\u201d says John. \u201cAnd then do the seemingly improbable.\u201d<\/p>\n The father of five has a professional track record that speaks for itself. His first company, MicroState, was bought by Raytheon in the 1970s. Not to be held hostage by his engineering background, he helped launch the movie channel Showtime, as the head of marketing and sales. In the 1980s, John, a futurist, became enamored with cable television and helped build the then-largest cable TV operator, Tele-Communications, Inc. In 1991, he founded Starz Entertainment Group, launching first the Encore and later the Starz movie channels. Known as the godfather of digital television, John urged Congress and the Federal Communications Commission (FCC) to adopt digital high definition television (HDTV) as the standard \u2013 he wrote the first white paper on digital compression and almost single-handedly convinced Congress and the FCC not to adopt an analog HDTV standard that would have thwarted the growth that makes the US television market the largest in the world today.<\/p>\n Challenges are part of the fabric of John\u2019s life. At the age of 14, John left war-torn China with his mother and two brothers. When his father was reunited with the family in the U.S., it was decided that John and his older brother would stay in the U.S. in a Catholic orphanage on Staten Island, N.Y., while his parents and younger brother got settled in Europe through a diplomatic posting. He lived in the orphanage until he graduated from high school. After receiving full scholarships, he earned a bachelor\u2019s and master\u2019s degree in electrical engineering.<\/p>\n John and Anna married and raised five children; living in New Jersey until 1984, when they moved to Colorado. The two immigrants, from entirely different cultures, came in search of a better life in America. Their blended clan is a melding of interests and international influences bound by the glue of family.<\/p>\n But nothing was easy, says their daughter, Michelle. \u201cI remember both my parents working long hours \u2013 my mom managing the home, and my dad constantly traveling for his business. But we are immigrants, we don\u2019t expect things to be easy and we know how to work hard.\u201d<\/p>\n Though retired, the Sies tackled the issues around Down syndrome with their customary gusto. John was concerned about what could be done through research and Anna wanted to provide immediate medical care and programs for the children. John\u2019s attitude towards Down syndrome was no different from any other intellectual puzzle he had encountered in engineering or business. He started from the ground up, going directly to geneticists and molecular biologists with his questions.<\/p>\n Tom Cech, Nobel Laureate<\/p><\/div>\n In 2006, the Sies organized a summit gathering some of the world\u2019s best scientists, including Nobel Laureate Tom Cech, to explore the possibility of break-through research for people with Down syndrome. Many of the scientists were skeptical about just how much could be done through science to improve the lives of people with Down syndrome. But at the end of the summit, the scientists had two major reactions: (1) shock that Down syndrome was the least funded genetic condition by the National Institutes of Health, and (2) confidence that given recent advances in science and technology, measurable breakthrough for people with Down syndrome could be accomplished in a short period of time with appropriate levels of funding. The scientists, who gathered for the summit held at the University of Colorado at Boulder, gave the Sies hope.<\/p>\n That same year, the idea of the first academic home for Down syndrome research was born.<\/p>\n In 2008, the Sies\u2019 family foundation, the Anna and John J. Sie Foundation<\/a> became the founding donor of the Istituto Linda Crnic per la sindrome di Down<\/a>. The Crnic Institute is the first in the United States to identify basic, clinical, and developmental research, alongside medical care for people with Down syndrome, as its core focus. The mission of the Crnic Institute is to eradicate the medical and cognitive ill effects associated with the genetic disorder. The partners of the Crnic Institute are the University of Colorado Denver School of Medicine<\/a>, il Universit\u00e0 del Colorado Boulder<\/a> e Ospedale pediatrico del Colorado<\/a>.<\/p>\n The Crnic Institute is named after Dr. Linda Crnic<\/a>, the former Director of what is today known as the Intellectual and Developmental Disability Research Center<\/a> in Colorado. A renowned scientist in the field of Fragile X, Dr. Crnic had started to focus her talents on research for people with Down syndrome before her life was tragically cut short by a biking accident. Dr. Crnic mentored the Sies and their daughter Michelle in identifying the challenges and opportunities associated with funding for such research. She also introduced the Sies to most of the prominent scientists working on research for people with Down syndrome. After Dr. Crnic\u2019s death in September of 2004, the Sies thought it befitting to name the institute after her. \u201cShe really cared about our kids first. The science was truly a means to end with Linda,\u201d shared Anna.<\/p>\n Part of the process of making people with Down syndrome come first for the Sies was ensuring that the science addressed medical issues associated with the condition. An integral part of the Crnic Institute is the Centro Anna e John J. Sie per la sindrome di Down<\/a>.<\/p>\n \u201cAnna wanted medical care and programs, I was more interested in the science. Happily, our daughter\u2019s due diligence proved that both were essential in order to make a seismic paradigm change for people with Down syndrome,\u201d says John. The Sie Center is the result of a year of due diligence on existing best practices and is a direct response to Anna\u2019s desire to provide the best medical care and create programs for people with Down syndrome. The Sie Center has a world-class team of Down syndrome experts providing medical care as well as conducting clinical research.<\/p>\n \u201cMost of the investment regarding Down syndrome research from the pharmaceuticals and medical community has been focused on early detection and termination,\u201d says John. \u201cBut there are over 400,000 people with Down syndrome in the US and millions world-wide living today that need their human and civil rights addressed.\u201d<\/p>\n John set a target date of 2017 to complete the mission of the Crnic Institute: eradicating the cognitive and medical deficits associated with Down syndrome. \u201cIt\u2019s an audacious goal,\u201d says John, who says he set the date of 2017, for selfish reasons. \u201cI want to see the results in my lifetime.\u201d If they reach their goal, people with Down syndrome will no longer suffer from sleep apnea, the early-onset of Alzheimer\u2019s, or cognitive deficits. Her staunch beliefs led to the creation of the \u201cDare To\u201d classes<\/a> under the Sie Center<\/a>, a Denver Zoo<\/a> internship program for people who have Down Syndrome, and the ALIVE Life-skills classes at the University of Denver for adults with Down syndrome.<\/p>\n Much of Anna\u2019s passion surrounding the welfare of children with Down syndrome stems from her own experience. When she arrived in the United States with her father and brothers, she shouldered the responsibilities of caring for her family. At the age of 11, she was already starting to manage a household. She did not have the opportunities that most of her American friends and classmates had, including going to college. \u201cAs a girl in an immigrant family, I know what it is like when people have low expectations for you. When doctors don\u2019t bother to get you real answers, when teachers won\u2019t teach, these are all just examples of low expectations.\u201d<\/p>\n
\n“We were going to love and nurture this baby no matter what.\u201d<\/h5>\n
\u201cThis has become our life\u2019s mission. We want the best for our granddaughter, but just as passionately, we want the best for all people with Down syndrome, young and old. As my husband says, from cradle to grave.\u201d<\/h5>\n
![\"Tom](\"\/wp-content\/uploads\/2011\/08\/tomcech.jpg\" "\\"tomcech\\"")
![\"\"](\"http:\/\/www.globaldownsyndrome.org\/wp-content\/gallery\/2009_NINE_Film_Screening\/19%20nine_9620.jpg\" "\\"Anna")
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\nAnna knew research would take time, and while she wholeheartedly supported the efforts, she wanted more immediate help. She was concerned that most doctors knew little about Down syndrome, and she wanted children with the condition to receive the best care from physicians and staff focused on the syndrome. She wanted accurate and unbiased information provided to women with a prenatal diagnosis of Down syndrome. And she wanted programs \u2013 and lots of them. \u201cWhy was it so hard to find a good music class, dance class, sports team or anything else for our children? Good teachers and good coaches can and do teach to all abilities. The issues I was hearing from other parents and grandparents didn\u2019t make sense to me. I wanted to turn everything upside down. I wanted the families of children with Down syndrome to decide what program would be so privileged to have their child \u2013 not what \u2018Downs kid\u2019 was lucky to get into some program.\u201d<\/p>\n
![\"\"](\"https:\/\/www.globaldownsyndrome.org\/wp-content\/uploads\/2018\/08\/2018_Crnic_logo.jpg\" "\\"crniclogo\\""){kind=logo}
Part of launching the Crnic Institute was establishing the fundraising, advocacy and education arm for the Crnic Institute \u2013 the Global Down Syndrome Foundation. The Sies\u2019 daughter, Michelle, established the Global Down Syndrome Foundation in 2009 and applies the same laser focus and intelligence to her work as her parents do. \u201cWe\u2019re proud of what Michelle and her Foundation are doing. Especially around the gross inadequacy of funding for research for people with Down syndrome from the