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November 2018 Newsletter: Executive Director

November 2018

Message from the Executive Director

Dear Friends and Families,

Fall is always a time of change. I am simultaneously struck by the beauty of the leaves changing while also pulled by the need to prepare for winter. It is a challenge sometimes to remember to pause and savor beautiful moments. At the office, we have gone from our Niemann-Pick Awareness Month in October to November’s National Family Caregivers Month and there has been a great deal of important information to communicate and share. Be sure that you’re receiving all our news and staying up-to-date by social media, our blog, and website updates, in addition to our newsletter.

As you remember, we launched the International Niemann-Pick Disease Registry (INPDR) recently. It’s an important tool to collect patient-reported and clinical data, and a valuable community resource. Learnings from this registry may be used for research and treatments in the future. Have you registered for yourself or your loved one yet? To learn more about the INPDR or to register in the patient portal visit

This month has seen so much news from our industry partners with clinical trials updates. Be sure to read all the community news and updates on our website and to reach out to us with any questions.

We appreciate our industry partners for the work they are doing to advance Niemann-Pick treatment options. We are also beyond appreciative to all of our families and friends who help support us. We cannot do the vital community advocacy and support work that we do without your assistance. #GivingTuesday is coming up on November 27th. Please think of NNPDF on this day of generosity and ask other to do the same. By supporting the foundation you can make a direct impact on our loved ones in all stages of their Niemann-Pick journey through advocacy and support programs that provide services to NPD families.

As we approach Thanksgiving, remember to pause and savor beautiful moments in your lives. Share these moments with us, they inspire us and fill our team with hope.

Warm Regards,

Joslyn Crowe, MSW, MA
NNPDF Executive Director