A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Friday, October 18, 2013

Research Team for Niemann Pick Types A and B

NP Awareness Month Banner

The Genzyme "Team" gathered at the Cambridge headquarters for a
group photo in support of October 2012 as NPD Awareness Month.

Today, Genzyme, a Sanofi Company, is hosting two presentations at their facilities in Framingham, MA, their manufacturing plant, and at their downtown Cambridge, MA office headquarters in support of October 2013 as Niemann-Pick Disease Awareness Month.

Making use of NNPDF provided informational brochures on NPD Types A & B (ASMD), newsletters, wristbands and posters, the presentations will include video testimonial from individual patients, as well as, updates on the progress of the ongoing Enzyme Replacement Therapy (ERT) clinical trials that are currently taking place with NPD Type B patients at Mt. Sinai in New York City and in the United Kingdom.  In addition, research information and updates on the continued efforts toward additional potential therapies for Niemann-Pick Disease Types A and B, also know as, acid sphingomyelinase deficiency (ASMD) will be offered to the Genzyme employees and attendees. 

The entire NNPDF family community wishes to offer a sincere note of thanks for the contiued efforts and commitment of the Genzyme "Team" who, not only continue to PERSEVERE toward their goals for a therapy with ASMD, but have become true partners towards this effort with all of the NPD community world-wide.   It is appreciated more than you know.


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