October is Down syndrome Awareness Month, and the Global Down Syndrome Foundation, in addition to promoting awareness of the condition, is dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Since its establishment in 2009, the foundation has rapidly evolved into an organization that helps people with Down syndrome to achieve the highest possible quality of life.
Down syndrome is caused by the presence of an extra 21st chromosome. People with the condition are prone to the following disorders: mild to moderate cognitive disability; a heart defect; hypothyroidism; celiac disease; eye disorders; respiratory infections; hearing problems; and depression or behavior problems associated with ADHD or autism. About 70% duffer from sleep apnea.
To gain an understanding of the Global Down Syndrome Foundation, I spoke with CEO and founder Michelle Sie Whitten. She experienced the challenges that confront a parent of a child with Down syndrome her daughter was born with Down syndrome 11 years ago. Since then, she has been tirelessly advocating not only for her own daughter, but for all individuals with Down syndrome and other special needs.
Michelle searched for a support organization and was unable to find one that could assist her. She also found that information from physicians and institutions was outdated. Therefore, she took a proactive stance that led her to found the Global Down Syndrome Foundation, a Denver, Colorado-based nonprofit she co-founded with her parents, Anna and John J. Sie. Michelle was a key architect in establishing the Linda Crnic Institute for Down Syndrome and its Sie Center for Down Syndrome at the Children’s Hospital Colorado. Michelle told me that, although, the condition is not curable, the focus of the Linda Crnic Institute for Down Syndrome is to eradicate the medical and cognitive ill effects associated with Down syndrome. This is accomplished via educating patients, their parents, and physicians about recognizing and treating the challenges confronted by people with Down syndrome.
In addition, the Global Down Syndrome Foundation is involved in educating government organizations and society, and introducing legislation so that every person with Down syndrome: is protected against discrimination; has access to evidence-based educational programs; enjoys a comparable, fair share of funding from the Federal Government for research, medical care and educational programming; is a valued member of society; has access to evidence-based medical care; has the opportunity to have a job and earn a decent wage without being disqualified for health benefits; and is able to reach their potential and lead a dignified, full and productive life.
Michelle told me that, although people with Down syndrome may have cognitive disabilities, they may have superior intellectual abilities in certain area. She cited an example of an intern at her foundation who has Down syndrome. She possesses superior abilities in math. Michelle’s work is a sterling example of how far advocacy for Down syndrome has become. Several decades ago, children with Down syndrome were institutionalized where they had no opportunity to achieve any quality of life.
The Global Down Syndrome Foundation hosts a number of “Be Beautiful Be Yourself” events including the “Be Beautiful Be Yourself Fashion Show” – the single-largest fundraiser benefiting people with Down syndrome in the U.S. The annual event attracts more than 1,200 guests each year, and has raised nearly $10 million in the past six years. Other activities include the Hollywood Ball Dance, ballet, musical instrument performances, cheerleading, football, and soccer.
For more information, click on this link.