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Posted by on Nov 1, 2019 in Foundation NewsLine, Type A, Type B, Type C | 0 comments

Message from the Executive Director

Message from the Executive Director

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Dear Friends and Families,

October Awareness was a flurry of activity.  We had video posts, a day of giving, the new INPDA Newsletter, International Niemann-Pick Awareness Day, daily Quick Fact posts, awareness-oriented social media profile pictures frames, and more, throughout the month.

This month we launched our new Pyramid of Support campaign geared towards showing community pride in supporting NNPDF. Support comes in all forms—through volunteerism, through sharing NNPDF news with those within the NPD community and outside in the general community, through raising awareness of NNPDF through fundraisers, and through donations.  Support comes from helping one another. I love the metaphor of “Support” for NNPDF and support for one another, and also the symbolism of the pyramid holding each other up and physically supporting one another.

Our ability to raise awareness of NNPDF and Niemann-Pick disease doesn’t end after October. Over the coming months you will see a series of photos and videos made by community members displaying their Pyramid of Support. Please join us—make a pyramid with your friends, family, co-workers, kids’ sport teams or classes, or with anyone you choose, and tag it with #pyramidofsupportnnpdf and share on social media. Help us keep raising the level of Niemann-Pick awareness.

One way that we do this as a national patient organization is through our role in advocacy at the national level. This month, NNPDF collected family impact statements from families throughout the US who wanted to share personal observations of the impact of adrabetadex, an experimental therapy, on their loved ones with the US Food & Drug Administration (FDA). We advocate for the community by participating in important community forums like the Patient-Focused Drug Development meeting held in March which highlighted patients’ and families’ general experiences with Niemann-Pick Type C without focusing on any specific experimental therapies. We also advocate for the community by reaching out directly to the FDA as a conduit for the Niemann-Pick voice. The family impact statements sent to the FDA this month were a response by NNPDF to many NPC community members’ desire to have their voice heard in the regulatory process and to advocate positively for their loved ones about their observations from this specific experimental therapy. We are pleased to share that this information was received by the FDA and to convey their sincere thanks to the patients and families for putting the document together.

As your national patient organization, we will continue to advocate with you and on your behalf for access to all treatment options, to help remove any barriers to these treatment options in the future, to elevate the voice of Niemann-Pick families, and to continue to raise awareness of this devastating disease. Raising awareness of Niemann-Pick Disease doesn’t stop after October. Please join us in our ongoing efforts to make our voices heard.

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Warmly,

Joslyn Crowe, MSW, MA
NNPDF Executive Director

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Please spread the word!