Global Down Syndrome Foundation Supports Alzheimer’s Awareness Month, Encourages Renewed Focus on Research and Care

Denver (Thursday, Sept. 27, 2012) – In conjunction with September being Alzheimer’s Awareness Month, the Global Down Syndrome Foundation joins in the call for increased public support for Alzheimer’s research and funding for care and caregiver support.

Because of the close connection between Alzheimer’s disease and Down syndrome, and the increased focus on Alzheimer’s research by the Linda Crnic Institute for Down Syndrome and the University of Colorado with the recent hiring of Dr. Huntington Potter, the new National and State Plans on Alzheimer’s present a unique opportunity to promote a better understanding of both conditions.

“Every person with Down syndrome develops some feature of Alzheimer’s disease by age 50, and all people with Alzheimer’s accumulate Down syndrome-like cells throughout their bodies,” Potter said at a press conference at the Colorado State Capitol.

At a town-hall meeting following the press conference, Potter, director of Alzheimer’s research at the University of Colorado School of Medicine, discussed the importance of studying Alzheimer’s and Down syndrome jointly, and the significance of the Linda Crnic Institute in that research. Potter said people with Down syndrome present a “golden opportunity” to look at how Alzheimer’s progresses even before symptoms start. “They’re the only human population we know for sure will develop Alzheimer’s disease,” he said.

At the town-hall meeting, Karen Josephson spoke about her sister, Gretchen, who has Down syndrome and has been diagnosed with moderate to severe dementia. Gretchen is a poet and author of the book “Bus Girl.” The discussion of how people with early-onset Alzheimer’s can struggle with medical-care issues and a drought of information hit home for her. “So many of the things you brought up reflect our journey,” Karen said.

The Global Down Syndrome Foundation is encouraged by the increased attention on Alzheimer’s awareness and advocacy and adds its voice to the call for seeking a cure and a means of prevention for Alzheimer’s in order to improve the lives of all people who suffer from the disease, including those with Down syndrome.

Potter joined the University of Colorado in July, and 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 1,000-mile radius of Denver.

 

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 benefiting 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.

 

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.

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