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October 2018 Newsletter: Message from the Executive Director

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October 2018
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Message from the Executive Director

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Dear Friends and Families,

October Awareness Month has been filled with activity! We have robust Niemann-Pick disease awareness programming through daily social media posts, and webinars, and family services initiatives. We’ve participated in conferences and made our voice heard on your behalf.

This is an important time of year for our community. It is our time to share information on Niemann-Pick disease with those who may be unfamiliar, to be inspired by our own community members, to remember those who have past, and to learn more about research and clinical trials in progress. We are fortunate that several of our industry partners had exciting news to share this month and also used this month to highlight Niemann-Pick disease.

With your continued support, and the hard work of our staff and board, we are committed to delivering on some very important initiatives that will help our community. They include:

  • Piloting a family services program to support all families and patients along the Niemann-Pick journey and to understand what are your highest priority needs. From newly diagnosed to grieving, caregiver or extended family member, your experiences are valuable to the structure we are building. Please read our Family Services update and continue to reach out to Laurie Turner, our Family Services Manager at familyservices@nnpdf.org.
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  • Partnering with the pharmaceutical companies to make sure your voice is heard.
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  • Working with the FDA to educate them on Niemann-Pick and the role of the national patient organization.
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  • Enhancing our communications through social media, our website, and our blog… If you want information, it’s available!

Last year you showed your support as a community and together help us exceed our $150,000 goal for the Vision of Hope Campaign. We are so grateful for all of you who have done what you are able to do to support the NNPDF.

We are ready to provide MORE of the resources our families need and deserve and we need your support to do this. We envision a future where families can be completely supported through every phase of this disease. If you share this vision with us, please consider as a family member, friend or professional service provider making a donation so that we can continue to deliver these resources and the goals we set last year to meet families, no matter where they are along their journey.

We are at such an important time with potential clinical treatments on the horizon and a new beginning for our community. With your help, the NNPDF will continue to be the unbiased patient organization, to advocate on issues that matter, and to represent your voice at the national level.

Thank you for your continued partnership.


Joslyn Crowe, MSW, MA
NNPDF Executive Director

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