DART and 4 other NPC family foundations continue their support of the SOAR-NPC collaborative effort. SOAR-NPC is in essence a virtual biotech, pharmaceutical enterprise seeking a drug cocktail to arrest the progression of NPC. In September 2009, at the National Institutes of Health, SOAR-NPC’s team was able to initiate its first human trial, and only …
Smokey Robinson Gala raises over $325,000!
On Friday, May 14, 2010, at the Palace Theatre in Stamford, CT, the Grammy Award® winning member of the Rock and Roll Hall of Fame, Kennedy Center honoree, and “King of Motown”, SMOKEY ROBINSON thrilled over 1,000 fans with stories of Motown and some of his 70 Top-40 hits like BEING WITH YOU, OOH BABY BABY, JUST …
FDA rejects Zavesca panel recommendation.
Unfortunately, in mid-March the FDA advised pharmaceutical company Actelion, which markets Zavesca that they would not yet approve Zavesca for NPC; that more definitive proof is required by the law. We are hopeful that further study efforts will lead to future approval. The consequence of the FDA’s decision is that too many children with NPC …