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 support our Niemann-Pick community, continue to find ways to move research forward, and deliver hope to our families.
2025 NNPDF Board of Directors
Left to right: Paul Merrigan, Anthony Leoni, Gail Koujaian, Mary Francis Harmon, Taylor Sabky, Deborah Cho, Dawn Stites, Liz Heinze, Kelly Lee, Mike Smith, and Garland Alvey.
EXECUTIVE COMMITTEE:
Liz Heinze – Board Chair
Taylor Sabky – Vice Chair
Mary Frances Harmon – Secretary
Mike Smith – Treasurer
EXECUTIVE COMMITTEE MEMBER AT LARGE:
Gail Koujaian
DIRECTORS AT LARGE:
Garland Alvey
Deborah Cho
Kelly Lee
Anthony Leoni
Paul Merrigan
Dawn Stites
EXECUTIVE COMMITTEE:
Liz Heinze Board Chair
Mother of Tyler, Katie, & Faith, NPC (In Memory) | Sheboygan, WI
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.
Taylor Sabky
Mother of Purnell, ASMD (In Memory) | Dedham, MA
Taylor’s Statement of Commitment: When Purnell was diagnosed in 2017, my family was embraced by the Niemann-Pick Disease community. I am honored to give back as a board member, and continue his legacy of bringing people together, raising awareness, and advancing research and treatment development. I firmly believe in the importance of solidarity and in the power of community; and I will continue to work hard to promote positive outcomes for all forms of Niemann-Pick Disease. I’ve learned the importance of sharing your story and hope to elevate the voice of those coping with any NPD diagnosis, especially those navigating ASMD (Type A or A/B). I hope to incorporate all the lessons I learned with Purnell, and I am eager to continue learning new skills to help meet the needs of the NPD community.
Mary Frances Harmon
Industry Executive | St. Simons Island, GA
Mary Frances’ 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.”
Margaret Fuller
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 Niemann-Pick Disease Foundation in pursuit of their mission. I am committed to making a difference in the lives of those living with Niemann-Pick disease and will relentlessly pursue all avenues to help patients and families.
Michael Smith Treasurer
Spouse of Anne, ASMD | Satellite Beach, FL
Mike’s Statement of Commitment: I have been involved with NNPDF for over a decade through my wife, Anne OConnor-Smith (ASMD). I know from my past familiarity with the work of the NNPDF that it provides a useful, needed service. I am pleased to be involved in an organization where I can contribute using skills learned through my life experiences. As a retired engineer and project manager, I plan to provide support in the management of the organization with a particular focus on finance.
Executive Committee Member at Large:
Gail Koujaian
Mother of Alec, and Hayley (In Memory), NPC | Prospect Heights, IL
Gail’s Statement of Commitment: I am excited to be a working board member of the NNPDF. My heart is full when volunteering and the bonus is to be working with the other wonderful Niemann-Pick Disease board members to advance the voice of the patients and their families. Our family has been part of the Niemann-Pick community since 2011. Harry, Alec and I have been involved with several Rare Disease Community webinars, pharma, advocacy groups, family foundations, INPDA, INPDR and would like to apply lessons learned with the NPD community.
Ultimately our goal is all the same, which is to work with whoever and whenever to advance the cause of the NPD community and find a cure for our loved ones and keep the memories alive for our angels. Together our voices will make a difference.
I look forward to continuing working on advocacy, raising awareness, supporting research, families and finding treatments side by side with our Niemann-Pick families.
DIRECTORS AT LARGE:
Garland Alvey
Father of Abby, NPC | Richmond, VA
Garland’s Statement of Commitment: I am honored to join the National Niemann-Pick Disease Foundation board. This foundation has been a lifeline for our family since our daughter, Abby, was diagnosed with NPC. The support from this community has been invaluable, and I am committed to paying it forward by helping newly diagnosed families.
My goal as a board member is to help the foundation grow in its reach and impact.
Over the past five years, I have been a strong advocate for my daughter, leading successful fundraising events as well as working with local, state, and federal government initiatives for Rare Disease. I have also had careers in healthcare as well as public safety. All of which has prepared me well to contribute to the foundation’s mission in a variety of ways.
I see the foundation growing stronger every day, especially with treatments close to being approved. Our commitment and collaboration with pharmaceutical agencies will propel us onward and upward, and I am excited to be a part of that growth to better help the Niemann-Pick community.
One of the biggest realizations the NNPDF has given me was understanding that despite the isolation that comes with an ultra-rare disease diagnosis, we are not alone. The National Niemann-Pick Disease Foundation helped me see that many families are going through similar experiences. Furthermore, I believe that by coming together as a broader community of childhood dementia, we can become stronger and more effective in our advocacy and support.
Deborah Cho
Legal Professional | Lake Oswego, OR
Deborah’s Statement of Commitment: I am honored to serve on the Board of the NNPDF and am deeply committed to supporting the organization’s mission through meaningful and informed advocacy. With experience at the U.S. Food and Drug Administration and in the private sector as an FDA regulatory attorney, I hope to contribute a unique perspective that bridges regulatory policy and real-world patient needs. My work in the area of pediatric drug development has given me valuable insights into the challenges and opportunities in advancing therapies for rare diseases. I am dedicated to using this background to advocate on behalf of the Niemann-Pick community and to support patients, families, and the broader network that works tirelessly on their behalf. It is a privilege to bring my expertise to this role, and I look forward to working collaboratively with my fellow board members to further the goals of the NNPDF and help drive meaningful progress for those affected by Niemann-Pick disease.
Kelly Lee
Mother of Gracie | Montgomery, TX
Kelly’s Statement of Commitment: My life took a drastic turn on Dec 7, 2022, the day we got Gracie’s NPC1 diagnosis. I felt all the emotions those first few days and weeks. With so many desperate questions, many without good answers initially, I felt overwhelmingly alone on this rare, unknown path. Things changed for the better when I connected with the NNPDF, I was no longer alone. There are people who care, people who listen, people who share their insight, people who get it, people who help. I believe in the comfort and power of collaborative relationships. I am honored to serve in this role, with a commitment to help change the course of Niemann-pick Disease for families and support all in our community.
Anthony Leoni
Father of Jessica, NPC (In Memory) | Los Angeles, CA
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 Merrigan
Industry Executive | Newton Centre, MA
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.
Dawn Stites
Mother of Cole, NPC | Tampa, FL
Dawn’s Statement of Commitment: I am extremely honored to be a board member. I’ve spent my entire professional career advocating for children and helping to support my students and their families. My son Cole inspires me every day to stay strong and continue to have hope. As a board member, I will continue to help support the needs of the NPC community, a community that has embraced my family and provided so much support. It is my goal to give back through raising awareness, promoting research, and supporting the NPC community to the best of my ability.
THANK YOU to our former NNPDF Board Members with great appreciation for your years of service!
Served as NNPDF Board Members
NNPDF Board Consultants
(Pro Bono)
Andrew Lieberman, MD, PhD
NNPDF Scientific Advisory Board Chair
Professor, Department of Pathology
University of Michigan Medical School | Ann Arbor, MI
NNPDF Board MEETINGS
The members of the National Niemann-Pick Disease Foundation (NNPDF) Board will meet on the below noted dates via conference call. For more information contact [email protected].
November 24, 2025
December 22, 2025