Sie Center for Down Syndrome marks first anniversary, becomes largest Down syndrome-focused Center in the U.S.

Multidisciplinary team of experts serves patients locally and nationally.
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Aurora, CO (January 3, 2012) – The Anna and John J. Sie Center for Down Syndrome (Sie Center), the medical care arm of the Linda Crnic Institute for Down Syndrome, opened its doors to patients in November 2010.  After just one year it has become the largest organization providing a multidisciplinary team of experts focusing solely on patients with Down syndrome. The Sie Center has served over 13% of children with Down syndrome under 21 residing in Colorado and has seen increased patient visits nationally including from Wyoming, Montana, Nebraska, Washington, California, and Florida.

Renowned specialist in Developmental and Behavioral Pediatrics, Francis James Hickey, M.D., medical director of the Sie Center, was recruited to establish and grow the center into an unprecedented team of professionals dedicated to improving the lives of people with Down syndrome through both medical care and clinical research.  “We’re fortunate to be housed at Children’s Hospital Colorado,” says Hickey.  “It is ranked fifth in the nation and has some of the best clinicians and researchers who also have big hearts for our patients with Down syndrome.  The vision is to provide the highest quality multidisciplinary medical approach for each child that comes through the door.”

Hickey, who has a son with the dual diagnosis of Down syndrome and autism, has put together a team of outstanding professionals at the Sie Center including nationally renowned experts Patricia C. Winders, senior physical therapist, Patti McVay, director of education, and Dee Daniels, program coordinator.  Together they have over 80 years of combined experience in caring for children with Down syndrome and developmental disabilities.  A recent addition, Dr. Kristin Jensen, a physician specializing in both pediatrics and internal medicine, is developing a program for transition from youth to adult care.  The Sie Center’s team also includes a genetic counselor, social worker, speech pathologists, therapists, and research assistants.  In its first year, the Sie Center served over 260 children with Down syndrome.

“We have always believed that children with Down syndrome deserve the best medical care and that there is a huge difference between seeing a doctor who has seen a couple dozen patients versus hundreds or thousands of patients with Down syndrome,” says Michelle Sie Whitten, executive director of the Anna and John J. Sie Foundation, the lead donor for both the Sie Center and the Crnic Institute.  “It is a dream come true to see what Dr. McCabe and Dr. Hickey are building for our children and for our future.”

From the prenatal phase up through age 25, the Sie Center offers multidisciplinary care, working closely with the Children’s Hospital Colorado’s Heart Institute, Breathing Institute, Neurosciences Institute, and Departments of Endocrinology, Otolaryngology (ear, nose, and throat care), Gastroenterology, Hepatology, and Nutrition. The Sie Center also offers a feeding clinic and sleep studies, covering conditions affecting many children with Down syndrome.

“There are some wonderful doctors and clinics serving children with Down syndrome, but most organizations don’t have the institutional or financial support to really invest in clinical research that will help us address problems, for example with the immune system or heart, to improve the length and the quality of life for individuals with Down syndrome.  I believe that is what really sets us apart,” says Edward R.B. McCabe, MD, PhD, executive director of the Linda Crnic Institute for Down Syndrome. “Not only is the number of children with Down syndrome seen in the first year impressive, but also the impact of the care. The Sie Center identified key services required and not being provided in every child seen.”

To evaluate the needs of each patient seeking treatment at the Sie Center, an initial consultation is set up with the team over the span of one or more days, depending on the medical needs of the child.  Resources and recommendations for optimizing the child’s medical care and development are shared with the family and the child’s primary care doctor.  Periodic follow-up appointments are arranged as appropriate.  For patients out of state, it is highly recommended to allow for two days of multidisciplinary consults.

Please call the Anna and John J. Sie Center for Down Syndrome at 720-777-6750 to make an appointment for your child with Down syndrome.  The Sie Center endeavors to keep its waiting list and waiting time for an appointment to a minimum.

About the Anna and John J. Sie Center for Down Syndrome
The mission of the Anna and John J. Sie Center for Down Syndrome (the “Sie Center”) is to provide the best medical care to children with Down syndrome regardless of race, gender, medical condition, socioeconomic status, and as a supplement to primary care. The Sie Center is headquartered on the Anschutz Medical Campus in Colorado and it is the clinical care center under the Linda Crnic Institute for Down Syndrome. The Linda Crnic Institute is the first organization in the U.S. with the mission to eradicate the medical and cognitive ill effects associated with Down syndrome through basic and clinical research and through clinical care.

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institue for Down Syndrome is the fist 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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