July 10th, 2015 ~ From the Desk of Chris Klauer, NNPDF Family Services & Marketing Director
In support of all in our NPD patient & family membership community, I will be posting weekly informational updates and NNPDF related resource opportunities. These posts will cover a broad range of topics and I welcome you to share any resources which you have identified and/or contact me if you need specific assistance with an issue.
This week I would like to bring to your attention a couple of things that you may not be aware. There is a short film that was created, produced and directed by a talented young film maker by the name of Carl Mason. Carl was able to create magic with a ten minute film and highlight the struggles faced by Millie (NPC) and her family. The inspiration behind Carl’s work is Hollie Carter who was diagnosed with NPC at the age of 2. IMAGINE is meant to encourage awareness for NPC. The film was sponsored and funded by the Hope for Hollie Foundation, Niemann Pick UK and the International Niemann Pick Disease Alliance.
Friendly Reminders and Updates!
- Don’t forget about the Vtesse NPC Community Town Hall Webinar slated for Tuesday, July 14th!
- There is also a reminder about the Family Conference deadline for reserving your room at the hotel by Wednesday, July 15th!
- Haven’t registered yet for the conference? No worries ~ contact me at the Central Office for assistance!
- I ran across an article that all parents of children with special needs should read and commit to memory! I wish I had read this so long ago when my son was diagnosed.
Please feel free to contact me at: firstname.lastname@example.org
or give me a jingle at: 1-877-287-3672 if you have any questions pertaining to the work of the foundation. If you find a great resource, please pass it along so I can share it with the rest of our NNPDF Family Membership!
Have a great weekend!
NNPDF Family Support and Marketing Coordinator