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Posted by on Apr 1, 2016 in Foundation NewsLine |

A Message from Lisa Chavez, NNPDF 2016 Board Chair

April 1st, 2016

Hello Community,

I have been a member of the NNPDF since our daughter, Breann, was diagnosed with NPC in 2004 at the age of 18 months. We lost her in 2006 at 3 years of age. Our time with Breann was a combination of the shortest, longest and most impactful years of our life. I am sure many of you taking this life journey can understand.

In 2007, I became a member of the NNPDF Board to honor our daughter’s legacy. My intent was two-fold:

First, I wanted to show my respect and offer my service as gratitude to all the founding members of the NNPDF and to every person who has served as at Board of Director or staff member of the NNPDF. The time and sacrifices of each of those individuals created a safe haven for my family in our darkest hour.

Secondly, I hoped I could contribute to the work of the Foundation so that those that would have to follow our path would be insured the same safety, comfort and support we received from the Foundation itself and the community that exists within in it.

This is my last year as a Board member before I take the mandatory year off and I am honored to serve you as the Chair of the NNPDF for 2016.

As Leslie mentioned in the past message, I have worked closely with her the past several years and have a great deal of respect for the position and responsibility that comes with it. As most people in a leadership role will admit, you are only as strong and effective as the team that supports you. It is with that strength that I accepted this position and where my confidence as the Chair lies. I have been blessed with amazing mentors over the past 5 years and could not be more confident in the NNPDF Board of Directors for 2016. Each one of them brings a specific area of strength that together has created a very solid Board. A Board that is eager and excited about both taking the challenges that have surfaced in the light of several clinical trials and also embracing the realizations of future HOPE that resides within these clinical trials for so many families.

We have a lot of work ahead of us this year as Board members. The landscape has changed dramatically over the past 5 years in the NPD community. Our goal this year is to identify what the most critical need is from us as a Foundation in the light of the new landscape and become vital in for filling that role. It’s impossible to be everything to everyone in today’s world when there are so many avenues with one click of a button, but if we can become an interstate to quickly get people to the support that is right for their family, then we will feel successful.

Change is hard and it’s sometimes hard to evaluate what that change should be, but it is also necessary for progress and to maintain a source of strength for those who are in need of support. You can assist us by letting us hear form you where you feel our greatest value is o the community. We will be working over the next 6 months to maximize our efficiency to assist families, researchers, pharmaceutical companies and related stakeholders. With your input we hope to maintain our status within the NPD community of an organization that is truly here with the goal of supporting and encouraging families and organizations who share our Vision of a world where Niemann-Pick disease is no longer a threat to a full and productive life for patients and their families.

Please take a minute to meet the 2016 Board members as well as our NNPDF Staff at the following link.  We have three new members this year. Justin Hopkin, Margo Frey and Missy Ward are all new to our Board. Also, we are pleased that Darrile Papier has come back onto our Board after taking a year off.

We are all honored to serve as Directors and look forward to doing so with respect for the personal journeys we each must take while pursuing a common goal.

Blessing on your journey,
Lisa Chavez

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