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September 2019 News: Executive Director

September 2019

Message from the Executive Director

Dear Friends and Families,

As summer draws to a close, we are still enjoying the positive feedback we are receiving from our families about their experience at our Family Support & Medical Conference last month. It is heart-warming to hear your stories of connecting with friends, finding support for your family, your interactions in the Family Advisory Working Groups, and your appreciation of the educational and break-out sessions throughout the weekend. If you haven’t had a chance to see the photos from the events, click here!

September is Newborn Screening Awareness month. NNPDF is a proud member of the FireflyFund’s Newborn Screening national initiative, partnering with community organizations to raise awareness of the importance of screenings for Niemann-Pick disease. Simply put, newborn screening saves lives. At NNPDF, we provide psychosocial supports and unbiased education and resources to families who are newly diagnosed as important part of our mission. You’ve told us clearly with your words and actions: Family support and advocacy are essential to the community. If you know a family who has been recently diagnosed with Niemann-Pick disease, please encourage them connect with us! If you’d like to learn more about the importance of newborn screening to our community, click here to watch our Community Webinar on the topic.

October Awareness Month is here and we need your help to continue the exciting growth of NNPDF! Over the past year 2 years we have expanded our Family Services to include Webinars, Direct Services, Group Chats, Hardship Programs. We have supported, created and attended some amazing Community Advocacy Sessions through, NNPDF Family Advisory Working Groups, the patient-focused drug development meeting, and collaboration with our international partners. 

To continue all this exciting work and community collaboration we need your help with support and awareness. Here are a couple ways this month that you can help:

Personalize your social media profile picture to help spread awareness of Niemann-Pick disease all month long! Please send all personalized profile requests to our talented Communications Manager, Jill at Click here for profile request details.

A social campaign. Follow, Share and Give on this day to show your support of providing the best resources for families and patients facing NPD.


NNPDF is proud to be a Full Member of the International Niemann-Pick Disease Alliance (INPDA) which works to collaborate with NPD organizations around the world on projects like the International Niemann-Pick Disease Registry (INPDR).


Joslyn Crowe, MSW, MA
NNPDF Executive Director