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September 2017 Newsletter

Dear NPD Families and Community Members,

We were pleased to have so many of you at our NNPDF Family Conference. It was encouraging for us to have your support of a reinvented NNPDF. This year’s focus at the conference was how we can become a stronger community and leverage our combined strength. On the first day of the conference, three panels were held where we shared important information on best practices in industry, clinical care and developing strong patient advocacy organizations. On day two, we held a Reinvention Panel where we shared our steps for the NNPDF Reinvention. Later that morning, we had a break out session where we gained valuable feedback from families on the Draft version of the NNPDF Vision of the Future.

Please visit our new Vision of Hope Reinvention web page at:

On this page, we focused on giving you a snapshot of the program and information we shared at the conference. You will see our Draft NNPDF Vision of the Future and have the opportunity to watch some of the panels from the conference. You can also watch a video by Dr. Marc Patterson plus read a letter by Dr. Ed Schuchman on why the reinvention is so important to our community. By no means is this everything, as we did have break out support groups and other family networking opportunities, which are so valuable to many of you.

Global Niemann-Pick Disease Awareness Month is also just around the corner. The theme for this year is Vision of Hope – Meeting the Needs of Today. This is a great time to educate your friends and family by sharing your story. As a reminder, we sent an update last week encouraging you to share your pictures with the office so that they can design a special NPD Awareness profile for you to use on Facebook. The more you share, the more awareness the NPD community receives. We have also updated our daily Quick Facts this year and will post them throughout October for you to post on Facebook.


At the beginning of October, we will be launching our Vision of Hope Campaign. Information will be communicated through an e-blast and on our website. Stay tuned for ways you can participate! You will learn how your support will make a difference in making a stronger NNPDF that meets the needs of all families wherever they are in their journey.

As a board we believe that the time is now for a new beginning where we honor one another’s contributions, listen to each other’s concerns, and as a community come together to make further strides to find treatments and a cure for Niemann-Pick Disease.

With gratitude, we thank you for your patience in helping us to get to this moment where we find ourselves rebuilding and looking forward toward a Vision of Hope.

Blessings to you and your family,
Lisa Chavez

Contributions through fundraising by NNPDF members, families and friends are used to support research toward finding treatments and a cure for NPD. Funds also support the National Niemann-Pick Disease Foundation which provides services to individuals and families affected by Niemann-Pick Disease. Please continue to support the following current and upcoming fundraisers.

Awareness events promote awareness to the general public about Niemann-Pick Disease.



Donating to the NNPDF has just gotten easier. You can now donate online through PayPal using your debit or credit card. Using PayPal is easy and having an account is not required. Click the button to donate now!

Clinical trials are currently underway studying treatments for Niemann-Pick Disease. For the latest Niemann-Pick Disease research updates, follow the links below.

Please note that patient liaison information has been added to the web page for each pharmaceutical company.






NIH Published Work on Carbon Nanotube Optical Sensor

The Heller lab at Weill Cornell Medicine recently published NIH work on a carbon nanotube optical sensor for mapping lipids in live cells. Their follow up work in collaboration with Daniel Ory – Scientific Advisor for NNPDF, is almost complete. For complete article, follow the links below.


A quick reminder that if you are not receiving our NNPDF monthly newsletter via email or have recently changed your address or email, please click the button below to join us or to update your information.


For the most current NPD information sign up to receive our blog update notice via email. This is a free service provided to our NPD community and signing up is easy! Just click the button below.

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