Pages Menu
Categories Menu

Why We Need Your Help


Why the Vision of Hope Campaign

Will Set a New Course for our Community

Wherever NPD families are in their journey, they need a safe and supportive environment, and a caring leader who understands how to build a strong and resilient organization.  This is why NNPDF Board is committed to rebuilding and bringing the Vision of Hope to our community. Many of you have spoken about what you need, and the urgency with which you need a strong NNPDF. 

What have we learned about your needs?

  • Families who are newly diagnosed
    For those newly diagnosed families reeling, trying to figure out who to go to and who to talk to, a strong NNPDF will be that place to get accurate, unbiased information, meet other families and share experiences.  The family conference support groups are also an important part of this effort, and moving forward we want to expand on this.

  • Families not in a clinical trial
    Supporting all families faced with NPD is a priority. Some families may choose not to be in a clinical trial for various reasons, other families may not qualify.  The NPD community needs a stronger NNPDF, one that provides information, caregiver support, equipment resources, and is prepared to unite the community around important health care issues.

  • Families involved in clinical trials
    Supporting treatments and the path to a cure is what we all want.  On the heels of four clinical trials, the NPD community needs a stronger NNPDF, one that provides information, partners with the international patient registry, and one that is prepared to rally the community around the FDA regulatory process, expanded access and health care advocacy..

  • Families involved in research
    The cornerstone of NPD families is strength and hope.  This is why so many families have supported research and continue to do so. The NNPDF needs to educate the community and bring greater awareness of NPD and the importance of supporting research to find a cure.

  • Families who have lost loved ones
    Families cherish the memories of those who live forever in their hearts. A strong NNPDF will keep the candle lit for those we have lost, and support those families throughout their grief journey.

How will we set a new course for the NPD community?

A strong, collaborative community will make this Vision of Hope possible for all families. We have set an ambitious goal of $150,000 for the Vision of Hope Campaign. This will help to support some of our operations next year. Our plan is to hire an Executive Director to start early in 2018 and begin delivering on some of the most urgent priorities that families have been seeking:

  1. Continue building our family services department that provides support, unbiased clinical information, and information on research initiatives.
  2. Invest in administrative systems that will allow us to better communicate to families and professional partners. These systems will allow the NNPDF to support the four clinical trials and represent all NPD families as a community partner as we move through the regulatory process in 2018 and beyond.
  3. Continue the governance process that began in 2017 and develop a structure and Board make-up consistent with the new NNPDF Vision for the future.