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Niemann-Pick Type C is a genetic, cholesterol storage disorder that primarily strikes children with death occurring before or during adolescence. There is also an adult onset form of the disease. The Ara Parseghian Medical Research Foundation is a non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease. The Parseghian Foundation is named in honor of Ara Parseghian, the much beloved and well-known Notre Dame Football Coach, whose three youngest grandchildren were diagnosed with NP-C in 1994. Medical research is the key to saving the lives of all those around the world afflicted with Niemann-Pick disease. You can help by donating to the Ara Parseghian Medical Research Foundation. Thank you.
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Our hearts are broken. The pain of losing our three youngest grandchildren is almost unbearable.
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Uplifting Athletes is a full service non-profit organization benefitting the rare disease community through outreach, research, education and advocacy. Chapters are run by college football student-athletes, providing them with an opportunity to gain practical job skills while learning how to leverage their assets and abilities to make a positive and lasting impact. A group of football players at Northwestern University have developed a chapter of Uplifting Athletes. After listening to Coach Parseghian speak at their homecoming last year, they chose Niemann-Pick Type C disease and the Parseghian Foundation as their focus. Chapter president Al Netter says that getting his Northwestern team to rally around Niemann-Pick Type C disease as a cause was easy. “I’m constantly getting guys asking how they can help out. They just want to get involved.” The Northwestern chapter of Uplifting Athletes held its first fundraising event, "Lift for Life" on July 22, 2011. Stay tuned for upcoming events! For more information go to: http://www.upliftingathletes.org/ua-chapter/northwestern
For each copy of The Night Before My Birthday Book sold on the web site, or by mail, we will donate $1.00 to charitable organizations that support children’s health, safety, and well-being through research and responsive services. The first organization that we are so happy to support is The Ara Parseghian Medical Research Foundation. Find out more at: http://www.nightbeforemybirthday.com/
Niemann-Pick Type C (NP-C) disease Research News
One Family’s Fighting Spirit - Read The Parseghian Family Story
More About Niemann-Pick - Read an overview of the disease diagnosis, symptoms and treatment.
Research on NPC -Articles on Potential Therapies
Contact us about getting involved in the fight against Niemann-Pick disease. 
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A Message From Cindy Parseghian Dear Friends, I find myself reading often the following quote I keep on my desk by Robert H. Goddard: “The dream of yesterday is the hope of today…and the reality of tomorrow.” Looking back, we find it hard to believe that it has been 14 years since our children were diagnosed with NP-C;...read more
Their resolve, however, to continue the fight against NP-C disease is not broken. The Parseghians and thousands of volunteers and friends across the US and around the world are raising funds and pushing medical research so that a treatment can be found. Please help us in this valiant effort so that everyone afflicted with Niemann-Pick around the world can live to realize their hopes and dreams. Thank you. 
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