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July 2018 Newsletter

JULY 2018


Message from the Executive Director

Dear Friends and Families,

In my recent blog post I wrote about the concept of community. I was drawn to this concept by the words that many of you with whom I’ve spoken over the past few weeks have told me, and the clear message I hear that the patients, families, and friends impacted by Niemann-Pick diseases are a special type of community; a group drawn together by challenges, commonalities, hope, and the relentless fight for a cure. I’ve found my conversations with our community members both heart-warming at times and heart-breaking other times, always enlightening though and I’ve appreciated being accepted into the community and trusted with your stories and history.

Many of us will gather together in a few weeks at our 26th Annual Family Conference. There we will hear from our clinician and research community members about the importance of clinical trials to the community, what it takes to bring a medication to market, and we will learn about the current FDA approved recruiting and active clinical trials as well as current research. We will discuss family support, and have much-needed time to break into groups specific to various needs. We will also talk about NNPDF’s role in advocacy on the national level and our involvement in the US launch of the International Niemann-Pick Disease Registry.

True to the theme of the conference our goals are supporting families, uniting our voice, and embracing hope. In listening to our community, one of the priorities identified and clearly needed to accomplish these goals is a family services and support program. To meet this need NNPDF is launching a Family Services Pilot Program, led by a Family Services Manager, to further evaluate the supports that our community seeks and to continue to support and empower patients and families affected by Niemann-Pick disease by meeting them where they are at in their journey. I am excited to share more news about this new program with you in Louisville, and most of all, I am looking forward to seeing you there.


Joslyn Crowe, MSW, MA
NNPDF Executive Director


NNPDF 26th Annual Family Conference


JUST 2 WEEKS remain before the NNPDF 26th Annual Family Conference being held from August 2-5 in Louisville, Kentucky!

HOTEL RESERVATION DEADLINE IS TODAY! Visit for all conference information including the 2018 Conference Agenda and Hotel Reservation information.

The 2018 Family Conference program provides time for attendees to exchange ideas, support one another, and learn from our shared experiences. Louisville offers something for everyone whether you enjoy history, shopping or an adventure.


NNPDF Equipment Exchange

The NNPDF Equipment Exchange Program assists families who wish to donate pre-owned equipment to others who may be in need. The foundation facilitates any equipment requests and donations. Click the Special Equipment button to check out all items available. If you have any questions or an interest in any items, please contact the NNPDF at

New This Month!

The NNPDF was recently contacted by a local business of mobility products. They have generously offered to donate some of their items to help families affected by Niemann-Pick Disease which include threshold ramps, wheelchair ramps, tray cargo carriers, and folding beach chairs, subject to availability. Follow the item links below for more information.



Helpful Tips From Families

Families Helping Families is a support program for families diagnosed with Niemann-Pick Disease to help other families with items or tips that might make living with NPD a bit easier.

Helpful tips or tricks can be invaluable information to share with others. These can be related to feeding, sleeping, vitamins and over the counter medications, behavioral coping, thickening agents, etc. We will compile a list of items or tips to share in future monthly newsletters that are sent out to NNPDF members. Send your helpful tips to


Clinical Trial Updates

The NNPDF posts new information regarding clinical trial updates as soon as it is received.

Please review our Clinical Trial Update procedure for alerting you to these updates as they are made:

1.  The office posts information received about trials and expanded access therapies from companies on the NNPDF website under the appropriate pharmaceutical company.
2.  When information is received, it is posted to the website and a summary post is made on the NNPDF Facebook Page and/or NNPDF Awareness Group, with a link back to our website where you can find more detailed information.
3.  All updates from pharmaceutical companies are included in the next monthly e-newsletter with links back to the original posting on the website.

To review past information already posted, just follow this link:



Fundraising and Awareness Opportunities

Contributions through fundraising by NNPDF members, families and friends are used to provide services and information to individuals and families affected by NPD, as well as supporting research into finding treatments. Please continue to host and support NPD fundraisers.

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

Click the Fundraising button to view current and past NPD events.

Facebook Fundraisers

The NNPDF would like to thank those of you who have hosted a Facebook Fundraiser in the past! Are you interested in hosting? It is a great opportunity to raise awareness and funds for the NNPDF.

If you are hosting a fundraiser please email the NNPDF Central Office at to let us know.


Stay Connected With Us

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.

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PO Box 49, Fort Atkinson, WI 53538-0049
Phone: 920-563-0930  |  Toll Free: 877-287-3672


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DISCLAIMER: The National Niemann-Pick Disease Foundation (NNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the NNPDF recommends consulting a physician to determine if information presented is applicable.
This newsletter is a service of the National Niemann-Pick Disease Foundation’s Family Services Program, made possible by the financial support of our member families and other generous donors and grantors. The NNPDF receives no government funding, nor does it host or receive funding from advertising or from the display of commercial content.
The National Niemann-Pick Disease Foundation is a 501(c)(3) organization. Your donations are fully tax-deductible.