A Message from Leslie Hughes, NNPDF Board Chair

March 24th, 2015

Hello NNPDF Family Members,

The National Niemann-Pick Disease Foundation (NNPDF) Board of Directors is pleased to announce a new feature to the NNPDF web site titled, ‘From the Board’. This web page has been created as a way for you to get the latest updates directly from the members of your Board as to the work which is addressed at the foundation and within the various committees. The Board is continuously looking for ways to best communicate information and updates. This is the first of upcoming messages from your ‘Board of Directors’ over the next few weeks and months ahead and we will continue to provide updates periodically as to the “happenings” of the Board and foundation as we move on through the year. 

Your NNPDF Board of Directors recently held the Foundation’s Annual Board meeting in Chicago, Illinois from Thursday, March 12th through Saturday, March 14th, 2015. Historically, the NNPDF annual meeting is held in late January or early February, however, this year we had the opportunity, through a restricted “Patient Advocacy Leadership” (PAL) grant from Genzyme, to incorporate a day-long seminar dedicated to nonprofit board development. The grant application was written to include, not only the NNPDF members of the board, but the Board of Director’s of the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF).  In choosing to hire an appropriate Board Retreat/Seminar Facilitator, three highly recommended organizations were interviewed by a seminar team comprised of NNPDF Executive Committee members, the foundation Executive Director and the CCNPDF Board Chair. The entire Board and Executive Director were also required to complete pre-seminar work to assist the facilitator in identifying topics to focus on further during the seminar sessions. Immediate feedback from the seminar participants note that the seminar and work sessions were extremely beneficial in providing further insight into leadership roles and future skill-building opportunities accessible to the Foundation Board.

During our annual meeting, the foundation annual business plan and program updates, goals and strategies are shared, fine-tuned and voted upon solely by the current sitting members of the NNPDF Board. Individuals associated with the NNPDF, who had previously indicated their interest in learning more about the role of a NNPDF board member, had submitted a “letter of intent” and resumes to the Nominations Committee for review.  These candidates were then invited to attend the annual meeting to learn more about the Board functions, meet the Board members and also provides an opportunity for the current members of the Board to meet and learn more about the prospective candidates. The Nominations Committee Chair will be providing an update shortly as to the Foundation’s Board member process and an announcement as to the 2015 NNPDF Board of Directors.

We were very excited to have Jim Green, President of the International Niemann-Pick Disease Alliance (INPDA), of which the NNPDF is a co-founder, and Dr. Andrew Lieberman, Chair of the International Scientific Advisory Board, join our meeting for the weekend. Jim provided a thought-provoking and inspiring presentation on International Opportunities and Challenges for Progress in Niemann-Pick Disease. In addition to attending the board meeting discussions, Dr. Lieberman, also participated in an early morning Research committee meeting. A member NPD family was also in attendance who shared important insights and perspectives with board members. We were very appreciative to receive their input and feedback.    

This year’s annual meeting had many components that I have not experienced during my five years as a member of the board.  These components led, from my perspective, to an interactive, learning and skill-building exercise. Here are a couple of facts that many may not realize…….over these three days in March, the time devoted towards meetings/seminar totaled approximately 17 hours in which the NNPDF and CCNPDF board members participated.  This did not include travel time to and from the Chicago, Illinois destination. All members of the NNPDF Board of Directors are volunteers and have full time careers requiring all to take time off from these job responsibilities to attend the annual meeting. Weeks in advance to the meeting, ongoing conference calls lasting from 1 to 2 hours each are held by the Committee Chairs and participants include:  Committee Members, the Executive Committee, as well as, the NNPDF office staff, all in support of developing and updating the NNPDF programs, plans and strategies. All current Board members have a personal connection with Niemann-Pick Disease of all types, either as an individual diagnosed with NPD or who have a family member affected by the disease. Your current board consists of members who come from all walks of life, reside across the entirety of United States, from Coast to Coast and all States in-between, and include representatives from Canada as well.

In closing I, along with the Board members, would like to acknowledge the staff of the NNPDF central office for their dedication, hard work and support in working with the Board to make the annual meeting and seminar a success. Thank you to the CCNPDF for their valuable participation and input. And a special thank you to all of the NNPDF board members for their dedication and commitment.  


Leslie Hughes

Leslie Hughes*

Board Chair

National Niemann-Pick Disease Foundation

*Great Aunt of Riley Corbitt (NPC ~ 7/27/02-10/29/08).       

 Leslie was elected to the NNPDF Board Chair position in February 2014.

Leslie Hughes Riley Corbitt
Leslie Hughes
Great-Aunt of...
...Riley Corbitt, NPC

Coming Soon ~ NNPDF Committee Chair Updates and Activities!



[Mar 24, 2015 ~ nmh]