Pages Menu
Categories Menu

November 2018 Newsletter: Family Services Update

November 2018

Family Services Update


November was a very exciting time here at the NNPDF, seeing all the local awareness efforts and learning more about you, the families in our membership, was very fulfilling. Thank you all for working hard to continue to raise NPD awareness locally and nationally. Together we are stronger!

One of the highlights of this fall for me personally was attending a patient advisory board with several parents of children and adults with NPC. I was able to absorb so much energy and information from this amazing group of parents, and their input will continue to help as I develop family service programs for you, our members.

I’m excited to announce that our first Family Services Connections Chat will take place on Thursday, November 29th at 8:00 pm ET/5:00 pm PT. The topic will be “Sharing Our Diagnostic Journey” and the group is limited to 5 people only. Don’t miss the opportunity to reserve your space in this inaugural session. To sign up please email me at

Have you completed the Family Service Connections Survey? I am so excited to offer small group video chats on topics you need! We had almost 50 people submit survey data. If you have not done so, please complete the survey to let us know how we can better support you.

Were you able to join board chair, Dr. Justin Hopkin as he presented a live webinar about the INPDR? If you missed the live webinar, please make sure to watch the recording here. Learn more about the INPDR today. Have you registered yet?  Send me a quick email if you have any questions and also to let me know you began the process.

Please remember I am here to help you during all phases of the NPD journey. Let me know if you have any questions or if I can be of assistance.


Laurie J. Turner
Family Services Manager