NNPDF Board of Directors
NNPDF Board of Directors
2021 BOARD OF DIRECTORS
The NNPDF Board of Directors serve in a volunteer capacity, without remuneration for their work. Most NNPDF Board Members have loved ones who are affected by Niemann-Pick Disease, whether children, grandchildren, cousins, or even themselves. Thus, they are highly motivated to see effective treatments and a cure become a reality as soon as possible, and they are dedicated to maximizing the use of the foundation’s resources for the benefit of all affected by this devastating disease.
Thank You to our dedicated Board Members,
for all you do to advance the Quest for a Cure!
NNPDF 2021 EXECUTIVE COMMITTEE
Garrett Hopkin | ASMD
Justin’s Statement of Commitment: I am honored to recently be selected as a board member for the NNPDF. As a board member, I will do my best to make the NNPDF fiscally sound and solvent organization. I look forward to helping the NNPDF assist great researchers who are working toward treatments for NPD. The Foundation has been an excellent resource for me and my family, and I hope to help the Foundation continue to grow in its role as the center for information sharing for NPD.
Kelly Thompson | NPC
Becky’s Statement of Commitment: I believe in helping build and strengthen the value and relationships for resources for families in a variety of ways. I enjoy being a team player, traveling and representing the industry in a positive uplifting manner. You have to have a passion to drive you every day. I will support families through the roller coaster of NPD. My cousin Kelly was diagnosed in 2005 with NPC1. I have been an advocate for her, learning as much as I can about the disease while helping my family through a very harsh reality of this awful disease. It is my duty to provide my family and others with all the support I can.
Tyler Heinze | NPC | 05/30/97 – 12/26/05
Katie Heinze | NPC | 11/21/01 – 01/22/2016
Faith Heinze | NPC | 09/04/03 – 07/22/2018
Liz’s Statement of Commitment: Our family has been a part of the NNPDF since 2005 and have attended every conference except one since 2007. It is my goal to take what I have learned while caring for our 3 NPC children and share that with a community that needs the support and guidance. I plan to work with the board members, community, and the NNPDF staff members to offer more support in multiple areas to make this undesirable journey one that is manageable from diagnosis, to the journey, to the healing aftermath. I also plan to honor my hero’s in the process including our daughter Serina and our angels Tyler, Katie, and Faith.
Anne OConnor-Smith | ASMD.
NNPDF 2021 DIRECTORS-AT-LARGE
Evren Ayik | ASMD
Kara’s Statement of Commitment: I first learned of the National Niemann-Pick Disease Foundation around 2003 when my oldest son was diagnosed with ASMD. In the past three years, I have not only watched the Foundation blossom in terms of living out its mission and vision statements, but I have also been personally inspired by the effort, expertise, and heart that the Board members and staff have invested in helping the entire ASMD/NPC community achieve a better quality of life through education, advocacy, and support services. As my son transitions into adulthood and the opportunity to become an NNPDF Board member has presented itself, I find myself enthusiastic about the possibilities of using my skillset and knowledge to contribute as much as possible to the NNPDF’s work. My goals are to be a voice for anyone who has thoughts to share and to work diligently and honorably as a team member to help the NNPDF find ways to meet the evolving needs of the entire community.
Chrystelle’s Statement of Commitment: I am honored to join the NNPDF foundation as a board member. Having worked on the ASMD clinical trials, I feel deeply connected to the NPD community. I will dedicate my time to ensure that the foundation remains a powerful resource and keeps providing constant information about these lysosomal storage disorders. I will offer broad knowledge about the clinical trial pipeline and the different clinical studies that are currently opened. I will bring my energy to support the NPD families and will do my best to make your projects come true.
Liam Ferguson | NPC
Meghann’s Statement of Commitment: The NNPDF has been an exceptional resource for education and support for our family and it is an honor to serve on the board. It is my hope that I can assist in providing information and support for other families, while also aiding in the growth of the organization.
Cara Gilmore – Director-at-Large
NPC Patient | Pittsburgh, PA
Cara’s Statement of Commitment: I am honored to serve on the NNPDF Board of Directors. As an adult-onset NPC1 patient, my goal is to build awareness of NPC and ASMD to promote early diagnosis and approved treatments. After my diagnosis in 2019, the NNPDF has provided me with a supportive community and I hope to be a resource and support to others. I look forward to collaborating with the NNPDF team to advocate for NPD patients and families and fight for potential cures.
Mary Frances Harmon – Director-at-Large
Industry Executive | St. Simons Island, GA
Mary Frances’s Statement of Commitment: I recently saw a quote that has inspired me in both my professional and personal life…
“If you have knowledge, let others light their candles in it.”
My career has been dedicated to healthcare since 1984 and I am most passionate about helping families living with rare diseases find treatments, hope, and, support as they navigate their journeys. I have experiences and knowledge from a variety of perspectives, both personally and through the biopharmaceutical industry, that I will share and help guide the National Neimann-Pick Disease Foundation in pursuit of their mission. I am committed to making a difference in the lives of those living with NPD and will relentlessly pursue all avenues to help patients and families.
Kari Lato – Director-at-Large
Patient Advocacy Specialist | Ixonia, WI
Kari’s Statement of Commitment: I am humbled by the opportunity to serve the NPD community. For nearly two decades, I have worked alongside patient advocates in the rare disease community across the country, fighting for changes in state laws that put patients first. I also support a close family member living with a rare disease. As a board member, I will tirelessly advocate for growing the Foundation to continue providing the best possible support for the NPD community. At the same time, I will help ensure that the board stays fully committed to its highest priority: finding a cure.
Jessie Leoni | NPC
Anthony’s Statement of Commitment: My wife Lisa and I have been on this journey since Jessica was diagnosed before her 1st birthday, in 1998. We started our fight for Jessica then, and haven’t stopped. It has taken many twists and turns and we have learned a lot. We hope we can help others with similar challenges. We have fought the fight and continue to love our Jessie. We see what other families are going through and want to help them, too. We are all members of a club that none of us wanted to join and together we can help make the lives of our precious children better.
Paul’s Statement of Commitment: I believe in NNPDF’s mission and vision and am honored to have the opportunity to serve the NPD community as a Board Director for the NNPDF. Having worked in the biopharmaceutical industry for over 25 years focused entirely on bringing treatments to patients suffering from rare diseases, I have had the privilege of forming deep relationships and productive collaborations with several rare disease organizations. I am deeply committed to making a meaningful difference in the lives of those people and their families affected by NPD and believe that with my experience I can help with bringing more hope by accelerating early diagnosis, new treatments and pushing for a cure.
NNPDF Board Consultants (Pro Bono)
Andrew Lieberman, MD
University of Michigan Medical School | Ann Arbor, MI
Stephen Mendel, Attorney – Legal Advisor
The Mendel Law Firm, L.P. | Houston, TX