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NNPDF Media Archive

Past issues of the NNPDF Newsletter

Past issues of the NNPDF Family Supplement

Niemann-Pick Disease Featured on CBS National News

Papier Family at the baseball game
Mark and Darrile Papier with their son, Dillon (NPC ~ age 6)

Niemann-Pick Disease was the subject of a CBS News segment which aired earlier this year, featuring the Papier family of Frederick, Maryland.

Mark and Darrile Papier are the parents of Dillon, age 6, who is affected by Niemann-Pick Type C.  The Papiers are members of the NNPDF, and Darrile recently joined the Foundation’s Board of Directors.

Click here to view the CBS News segment

Read more about Dillon Papier and the Papier family's ongoing efforts toward funding of research into a treatment for Niemann-Pick Type C Disease.

California State Budget Cuts Threaten Availability of Care
Jessica Leoni and Family Featured in CNN Coverage

Jessica Leoni

Jessica Leoni

Potential budget cuts by the State of California may affect the availability of health care for 12-year-old Jessica Leoni (NPC).  Jessica requires round-the-clock care, and the family depends on services which will likely be affected by the state's budget crisis and resultant budget cuts. Read the entire story here: CNNhealth.com story

Messages of support may be directed to the Leoni family via their Caring Bridge site.

[Aug 5, 2009 mem]