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December 2015 Newsletter

Thank You for your Support in 2015!

As 2015 draws to a close, there is still time to for you to bring Hope to our Niemann-Pick Disease (NPD) patients and their families. 

Johnathan Spencer, age 9 ~ NPC
National Institutes of Health Phase 1 Clinical Trial Participant


Throughout 2015, there were many FIRSTS for our NPD family membership with the incorporation of and recruitment for a number of clinical trials.  Some have started and others are getting ready to recruit patients.  This is a huge step forward for our NPD families.  In order to keep moving forward we must continue to raise awareness and funds. 
In 2016 as we continue to Persevere ~ Persevere for a Cure~ by raising funds for research and support for all types of NPD. 
There are so many things YOU can do to assist the NNPDF and our family membership in meeting our goals for 2016! 

  • You could host a Niemann-Pick Disease awareness event. 
  • You could support a fundraiser in your community in honor of a NPD patient and their family. 
  • You could sponsor a family to attend the annual Family Support and Medical Conference.
  • You could fund the work of our researchers and their laboratories.
  • You could donate in-kind services to benefit the foundation.
  • You could financially support the work of the foundation through a donation.

The NNPDF Central Office staff are here to help you with any of these events or questions that you may have!  A quick call or e-mail to the foundation office is a great way to get started.  We are here to help.
Perhaps you don’t have the time to spare right now to lend your time and talent in support of the foundations goals ~ you could then consider a financial donation to the NNPDF in honor or in memory of a cherished loved one living with Niemann-Pick Disease? 

Simply use the button below to make your donation!


With your help we can have and will continue to make a difference!  Through your support the NNPDF is able to offer the GIFT of HOPE to the many children, young adults and their families who are struggling with the ravages of Niemann-Pick Disease on a daily basis.
Please consider helping the NNPDF to continue on with our mission. 

Heartfelt thanks to you for your support in 2015 and for your continued generosity for the 2016 year ahead ~ we WILL Persevere in our QUEST for a Cure!

There is, like never before, Hope for the future ~ a future where Niemann-Pick Disease is no longer a threat to a full and productive life for patients and their families.

The NNPDF’s accomplishments of the past 23 years are due to the efforts of parents and families desperate to save their children from the devastating effects we know as Niemann-Pick.

Coping With Loss During the Holidays

Holidays are often difficult for anyone who has experienced the death of someone loved and cherished.  Rather than being times of family togetherness, sharing and thanksgiving, holidays can bring feelings of sadness, loss and emptiness.  Listed below are a variety of resource links that provide suggestions and/or actions that will help you and others in your family to better cope with your grief during this joyful, yet painful, time of the year. 

Remember to be tolerant and compassionate with yourself and your loved ones as you continue to heal.  

There is also a Facebook Page that was set up for those that have lost a loved one to Niemann-Pick Disease.  It is titled Niemann-Pick Families of Loss.  Thank you to Liz Heinze, Mom to Tyler (NPC), Katie (NPC) and Faith (NPC) for establishing and hosting this FB discussion page.

Please do not forget that the NNPDF Central Office staff  are here for you ~ even if you simply need to have a connection on the other end of the phone or e-mail.  Please feel free to reach out to us at:  1-877-287-3672 / 920-563-0930 / or contact Chris Klauer, NNPDF Family Services and Marketing Coordinator at: 

Giving the Gift of Hope in 2016!

During these tight fiscal times, we understand that there are many worthy causes vying for your donation dollars.  You can be assured that your gift to the NNPDF will be greatly appreciated and faithfully stewarded to bring the greatest benefit to families dealing with Niemann-Pick Disease in 2016 and beyond!

Thank you in advance for your help towards our Quest for a Cure and supporting the National Niemann-Pick Disease Foundation (NNPDF) so that we can provide the Gift of Hope for our NPD patients and their families.

 Click here to donate now!Donate Now

There is, like never before, hope for the future ~
a future where Niemann-Pick Disease is no longer a threat
to a full and productive life for patients and their families.

The NNPDF’s accomplishments of the past 23 years are due
to the efforts of parents and families desperate to save their children
from the devastating affects we know as Niemann-Pick.

2015 E-Newlsetter Recap

Looking back over all that has occurred within the Niemann-Pick Disease family and medical community in 2015 ~ there are certainly MANY milestones reached which have assisted the foundation and medical/research community in moving the threshold towards a treatment for all types of Niemann-Pick Disease further along.

With that in mind, we are listing a quick link recap of each e-Newsletter sent out to the NNPDF membership during the past year ~ just in case you missed reading up on the work of the foundation, joined the NNPDF partway through the year or are interested in re-visiting and important article.

January 2015      February 2015     March 2015     April 2015     May 2015     June 2015    July 2015     August 2015     September 2015     October 2015     November 2015

Again, the work of the foundation wouldn’t be moving forward if it wasn’t for the ongoing support and financial assistance of our constituents ~ it is appreciated.

As always ~ we WILL Persist in our Quest for a CURE!

Giving the Gift of Hope ~ Legacy of Hope & Donations!

With the end of the year right around the corner, it reminds us of how far we’ve come in 2015 thanks to the ongoing work and research generously funded by our Niemann-Pick Friends and Families.

There are currently several promising NPD clinical trials in progress, which could lead to live-saving therapies. The NNPDF continues to fund promising research laboratories and we continue to raise awareness into NPD across the country. All of these efforts combined help us to continue moving towards that “Legacy of Hope” for a brighter future and eventually, a cure for all.

Here is how you can help give the Gift of Hope for 2016!

Every little bit helps, even if you can only volunteer your time.  We understand not everyone can give money, which is why your support in any capacity is every bit as important.

Your contributions will not only assist us as we work to provide support to our families, but also enable us to offer the Gift of Hope through research!

Don’t forget to make your tax deductible donation
before December 31st, 2015!

All donations postmarked by December 31st, 2015 will receive a tax deductible receipt for 2015!

Click here to Donate Now online!

Donations by Check:
Make payable to NNPDF
P.O. Box 49
Fort Atkinson, WI 53538-0049

 Thanks for your continued financial support in the fight against Niemann-Pick Disease!
Please contact us if you have any questions or need further information.

The NNPDF is a non-profit 501( c) (3) foundation and your gift is
fully tax-deductible to the limit of IRS rules and regulations.
Tax ID #35-1844264 //

9 8.16

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


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