Dear Friends,

Just over a month has passed since we gathered in person at our annual Family Conference and once again, I find myself missing our incredible NNPDF community. This year has brought its share of transitions and challenges, but your feedback after the conference has been deeply encouraging. It reminds us why we do what we do: to build connections, strengthen support, and foster relationships that help so many of us navigate everyday life with Niemann-Pick Disease.

As many of you know, our Executive Director stepped down just a few short weeks before the conference. While we are grateful for the contributions she made during her time with us, we understand and respect that this was not an easy decision. In the wake of her departure, our dedicated Board of Directors have been working diligently to move forward with intention and care. We are taking this time to thoughtfully evaluate the evolving needs of our community and to ensure that our next Executive Director brings not only the right experience, but also a heart for our mission and families.

Earlier this year, we also experienced another major transition as our beloved Laurie Turner announced her departure from NNPDF to pursue new aspirations as well as spend time with her family as they grow and achieve all that they are meant to be. Laurie’s impact on our community is immeasurable, and while we miss her presence dearly, we are grateful for the support she continues to offer during this transition. Her legacy of compassion and advocacy remains deeply embedded in the work we do every day.

Despite these changes, our commitment to serving you remains unwavering. The Foundation is strong and steady, thanks to the tireless efforts of our Board and staff. We continue to meet families wherever they are in their journey with Niemann-Pick Disease and strive to be a source of guidance, support, and hope.

The Family Support & Medical Conference recordings are now available!  Whether you were able to join us in person or not, we hope these sessions offer valuable insights and strengthen the sense of connection that makes this community so special. Looking ahead, we are excited to launch new tools and resources to help you better understand and navigate this disease.

With October Awareness Month on the horizon, we have a full calendar of engaging content planned – from social media profile frames and community chats to impactful awareness campaigns. There will be many ways to get involved and help amplify our shared mission.

Thank you for your continued trust, resilience, and the love you bring to this community. Together, we are moving forward with purpose, with strength, and always with heart.

Warmly,

Liz Heinze, RN
NNPDF Board Chair