The Parseghian family
In the 18 years since her family began advancing research into the rare, fatal disease that killed three of her four children, Cindy Parseghian has never felt more hopeful about a treatment. Phase One human clinical trials using the drug cyclodextrin to treat Niemann-Pick Type C recently began, the National Institutes of Health confirmed this week.
The Parseghian family
The Parseghian family, from left to right, Ara, in shorts, Michael, long pants in front row, mother Cindy, holding Christa, father Michael, Marcia, in front row, and grandfather Ara Parseghian, former Notre Dame football coach, is shown in Tucson, Ariz., in 1994. (AP Photo/John Mueller)
The Parseghian family
Cindy Parseghian posing for a photo Thurs. May 5, 2011 in her Tucson, Ariz., home, is the mother of four, Ara, Michael, Marcia and Christa. Michael, Marcia and Christa died of Niemann-Pick Type C genetic disorder.
The Parseghian family
The Parseghian children Ara, top, Michael, left, Christa and Marcia in 1996. Photo by Philip Ramackers Studio Z Photography. Family handout.
The Parseghian family
Singer Amy Grant sits withÊMarciaÊParseghian, left, and Christa Parseghian, right, inÊApril 1997. Marcia, Christa and their brother Michael all died of a genetic disease calledÊNiemann-Pick Type C. Grant performed during theÊ14th Annual ÒOne More Victory, Ara!Ó Celebrity Golf and Gala Weekend, a fundraiser for theÊParseghian-founded foundation that benefits research on the disease. Source:ÊAra Parseghian Medical Research Foundation
The Parseghian family
Mike, left, and Cindy Parseghian pose for a photo in their Tucson, AZ., home, Thursday April 14, 2005 with their 16-year-old daughter Marcia. Ten years ago the Parseghians started a foundation for research into Niemann-Pick Type C.
The Parseghian family
Marcia Parseghian, center, who suffered from Niemann-Pick Type C disease, and could not talk or hold a pen, with her friends Perri Blaser, and Codie Wintrode as they collect cards after a game of "steal." May 22, 2003.
The Parseghian family
Marcia Parseghian, center, and her very loyal friends, Perri Blaser, left, Alex Ricker, second from left, and Codie Wintrode.
The Parseghian family
Marcia Parseghian.
The Parseghian family
Parseghian family ( l-R) Christa 6, Mike, Cindy and Marcia, 8 pose in front of their house in 1996.
The Parseghian family
The Parseghian Family Mike and Cindy.
The Parseghian family
Cindy Parseghian (center) with her children Michael,10 (lower right), Christa, 5, (with flowers on her shirt), Marcia, 8 (in pink), and Ara, 12 (upper left). The three younger kids all died of Niemann-Pick Type C.
The Parseghian family
Holding the Olympic Torch, Ara Parseghian (right) smiles toward the family's doctor, Dr. Mary Cochran (left-in sunglasses) as he leaves the DeMeester Outdoor Performance Center. Jan. 2002.
The Parseghian family
Cindy Parseghian receives congratulations from a well wisher after being named Tucson Chamber of Commerce's Woman of the Year. Parseghian is standing under a photo of her late children, from left, Marcia, Christa, and Michael, after whom she founded the Ara Parseghian Medical Research Foundation and has raised millions of dollars to help save the lives of people stricken with Neimann-Pick Type C disease. She was surprised with the news on Dec. 31, 2009 at the Foundation's Tucson headquarters.
The Parseghian family
Marcia Parseghian, 16, at Catalina Foothills high school, the third of the Parseghian children that had the Niemann-Pick Type C disease, Saturday April 30 2005 in Tucson, Ariz.
In the 18 years since her family began advancing research into the extremely rare, fatal disease that killed three of her four children, Cindy…