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August 2018 Newsletter: Message from the Executive Director

August 2018

Message from the Executive Director

Dear Friends and Families,

This Newsletter comes to us as summer is winding down, many children are returning to school and we are readying for the fall.  It was such a delight to meet so many of you earlier this month in Kentucky at this year’s Family Conference. It was amazing to see families come together with the ability to celebrate milestones with some, while still sharing the pain of loss with others.

It’s clear that we are a special community and have so much to share with one another. NNPDF was honored to provide this special opportunity for families to connect. We greatly appreciate those who helped financially sponsor the event and very special thank you to all of you who volunteered in so many ways over to make the conference the success it was.

The weekend was full of insightful presentations from all our industry partners, with encouraging updates on current research that is continuing to progress us to a cure. There were many break out groups where families where able to deepen their relationships through commonalities and support, while also educating us on what is important to you moving forward. As with every year, Saturday Nights Gala was the hit of the conference. Seeing the joy on so many faces as the Activity Zone performed for us and we danced the night away was the perfect ending to our time together. You can see pictures from the Gala night and throughout the conference here.

Many of you met Laurie Turner, who we introduced at the conference as our new Family Service Manager for our pilot program. Laurie brings 15 years of experience with family services programs at the MPS Society and has already begun connecting with the community members. Laurie can be reached here and is available for consultations, questions, information referrals, or just a supportive call.

This continues to be an exciting time of hope for us as a community. We are fortunate to have multiple clinical trials ongoing, along with many research programs with regards to all types of Niemann-Pick Disease. The landscape of this rare disease will continue to evolve and change in the coming years. As the national patient organization, we will continue to remain at the forefront and to share all available information with you in an ethical and unbiased manner, while advocating on behalf of the community.  

I hope that you enjoy these final weeks of summer. 


Joslyn Crowe, MSW, MA
NNPDF Executive Director