Friday, July 9, 2010

Promising Therapies for NPC

"Promising Therapies for Niemann-Pick Type C Disease"
NINDS Meeting
June 2010

We have had quite a bit of discussion on our listserv pertaining to the recent research and treatment options for Niemann-Pick Type C (NPC) Disease.

To provide some background and insight for these continuing discussions, we have compiled a summary of the presentation abstracts from the "Promising Therapies for Niemann-Pick Type C Disease" meeting sponsored by the National Institute of Neurological Disorders in Rockville, Maryland, June 3-4.

Visit the NNPDF's Latest Research page to read the presentation abstracts from this important conference.

Thursday, July 1, 2010

Emily Jane Hrbacek

Emily Jane Hrbacek
July 15, 1999 - July 1, 2010

It is with great sadness that we pass along word of the loss of Emily Jane Hrbacek due to Niemann-Pick Disease Type C. The beloved daughter of Scott and Laura Hrbacek of Eureka, Missouri, Emily was just shy of her 11th birthday.

We received this message from Emily's family:

This morning Emily passed away peacefully and is no longer suffering. Emily passed from the complications of Niemann-Pick Disease. Emily put up a long fight but in the end now the fight is over. Emily had the most beautiful eyes and a smile that melted everyone's heart. Emily was the best child that God could have given us and she will be missed by many. God bless our angel.
A visitation will be held at Most Sacred Heart Church, 350 East Fourth Street, Eureka, on Sunday, July 4th, from 3:00 - 8:00 p.m. Funeral mass will be at 10:00 a.m. on Monday, July 5th, also at Most Sacred Heart, with burial at Holy Cross Cemetery.

Our deepest sympathy to Emily's parents, family and many friends.
To learn more about Niemann-Pick Disease, visit the National Niemann-Pick Disease Foundation (NNPDF) Web site.