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December 2017 Newsletter

Dear NPD Family and Friends,

This past year the NNPDF celebrated 25 years as a patient group organization, supporting patients and families facing NPD, while continuing to help move research progression forward. We embrace the enduring strength and passion of our community with great appreciation for those who originally established the organization, along with past and present Board members and all of those who have worked hard to support the work of the foundation.

As we reached this 25th year milestone, we did so with open minds and a goal of how we can assure we continue to meet the growing needs of families and move research forward until we have a cure for NPD. The answer was not simple, not easy. The Community Needs Assessment that we conducted spoke to the challenges we faced and the hard work it would take as a community to come together and to reach this goal. Just as the founding parents of the NNPDF did, today’s families are demonstrating perseverance and commitment to the new Vision of Hope that we believe will sustain us, as a patient group and help us to guide the process for these exciting opportunities that these four clinical trials present. This is a unique moment in our history when we are poised to meet the growing needs of today.

Recognizing this, we celebrated our 25th Anniversary year with a new approach at our family conference. Many families came together to attend with open hearts and minds to evaluate how we strengthen the legacy of NNPDF and retain a strong, unified patient voice. Together at the conference we developed a broader understanding for best practice in patient support and advocacy. Our break out session, discussing the new NNPDF Vision for the Future, was met with positive feedback and overall approval for the proposed direction. With that in mind, we launched our Vision of Hope Campaign this fall, in an effort to raise the funds needed to meet the growing needs of our community. Today we are thrilled to share that we have reach 2/3 of that goal to date!

We are confident, that as the campaign runs into the first quarter of 2018, we will meet our goal together. With this positive support for the direction of our future, we have begun our search for an Executive Director that will have the skills and experience to continue to guide us through the next steps into our future. You can learn more about our ED Search Committee process and the Executive Director role by visiting our website at:

Each one of us is a unique piece to this puzzle that has come together as a community. As a unified group, we begin to see the story of our lives create a beautiful vision of hope for the future, even in the midst of our darkest days. For those who have experienced loss this year, we continue to hold you the closest. The legacy of your loved one will always be remembered and will hold a unique place in our hearts.

Blessing to you and your family,

Lisa Chavez
NNPDF Board Chair


As the year comes to an end the NNPDF is keeping all of our families in our thoughts now and throughout the year.

DONATE NOW to the Vision of Hope Campaign through PayPal using your debit or credit card. Using PayPal is easy and having an account is not required. Click the button to the right!

It was an honor to be recognized by the Fort Atkinson Chamber of Commerce for 25 years of service. Pictured here are founding NNPDF member, Barbara Vorpahl and Chris Klauer.


Families Helping Families
 is a support program that was recently developed to offer NPD families a chance to help other NPD families with items that might make their lives a bit easier. These items can be in the form equipment, clothing, diapers, formula, medical supplies, etc. We welcome any ideas, tips or tricks you have found helpful as well.

The NNPDF Equipment Exchange is a part of the Families Helping Families program. As NPD patient and family needs change, equipment may become available that could be used by another family. The NNPDF assists families who wish to donate this equipment to help others in need. The foundation posts descriptions of equipment available and facilitate any equipment requests. Click the special equipment button for updates on equipment availability.



Safety 1st – Bed Rail

Recently available is a Safety 1st Bed Rail. This bed rail clamps around and over the top of the mattress so there’s no possibility of a gap. Measures approximately 40” long x 26” high at shortest adjustment. CLICK HERE for more item information. If interested in this item, please contact the NNPDF central office.

These are the updates the NNPDF has received since the last newsletter with regards to clinical trials. As a reminder, new information is immediately posted to the website as soon as it is received. Follow this link:

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

  1. The NNPDF website is updated with the new information under the specific pharmaceutical company.
  2. An update is posted on the NNPDF Awareness Facebook Page linking individuals back to said page on the NNPDF website.
  3. The update is then saved to be put in the next enewsletter that comes out via email about the third Tuesday of each month.





CTD Holdings Receives Rare Pediatric Disease Designation for Trappsol(R) Cyclo(TM)


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