Our leadership reflects a range of family, professional, scientific, and geographic perspectives and is committed to transparent, ethical governance in service of patients and families above all else.
Chair
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.
Secretary
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.
Treasurer
Clinical Pharmacy Specialist | Portland, OR
Kasey’s Statement of Commitment:
I am grateful to serve as a Board Member for NNPDF and am deeply committed to honoring the mission and values of the organization. With my work as a clinical pharmacist in Family Medicine, I hope to bridge the gap between patients and delivering care. Throughout my education and career, I have learned both the barriers and opportunities that lie within our healthcare system. I firmly believe that patients need advocates in order to receive the best care and am dedicated to bringing these skills to the Niemann-Pick community and families.
Through continued education and awareness there can be meaningful positive change. In joining this organization, one of my goals is to continue to expand education on Niemann-Pick Disease to increase public awareness. I am looking forward to connecting with my fellow Board of Directors, families, and the larger Niemann-Pick community as we continue to amplify our voices.
Secretary
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.
Member-at-Large
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.
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.
Industry Executive | Ogden, UT
Anne’s Statement of Commitment:
My journey in the rare disease community began in 2013 when my son was diagnosed with an ultra-rare disease. Since then, I have served as both a caregiver and a leader within the nonprofit, parent-led rare disease advocacy communities, working to support families navigating the complexities of rare disease. In my current role in patient advocacy at a biotechnology company, I continue to champion the needs and voices of patients and families, helping bridge the gap between lived experience, advocacy, and innovation. Drawing from my personal journey and professional experiences, I am committed to leveraging my perspective, knowledge, and passion to strengthen the National Niemann-Pick Disease Foundation and uplift the families and communities it serves.
Grandmother of Juniper, ASMD | Melbourne Beach, FL
Judy’s Statement of Commitment:
I have chosen to serve on the National Niemann-Pick Disease Foundation Board to help families, like mine, affected by all types of Niemann-Pick disease. News of my granddaughter’s diagnosis within her first month was devastating. Accessing information and connecting with others at my first NNPDF conference in 2023 filled my daughter and I with hope. It became apparent that, despite the rarity of the disease, research is underway and that new developments are occurring. However more needs to be done: raising awareness, advocating for additional newborn screening, encouraging participation in research, empowering and supporting families by providing connections and resources, and last but not least raising funds. Families in this unique community face all kinds of stressors and complex situations. As a retired nurse, volunteering to serve on the Board seems like a meaningful endeavor as I’d like to share hope and support by engaging with families as they maneuver through their journey while keeping in mind the bigger picture of working toward a cure.
Volunteering as a Board member is more than engaging with families. I’m sure there are committees, projects and other needs that I can be helpful with in support of the overall NNPDF mission. I look forward to learning more, getting involved and being an asset to the team.
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.
Senior Consultant Health Safety and Environment | Cedar Hill, TX
Joseph’s Statement of Commitment:
I am honored and delighted to serve the National Niemann-Pick Disease Foundation. With many years in the US nonprofit healthcare system, over 10 years in the pharmaceutical industry and prior appointments in other non-profit Boards, I bring a set of varied experiences in health services and rare diseases, including Niemann-Pick type C that I am eager to apply in this service role.
Throughout the years I have spoken with several patients and families who have labored through the daily challenges of this chronic condition. This motivates me to support and encourage new advancements for the patients living with Niemann-Pick disease by aligning my efforts to the NNPDF’s strategic direction and long-term sustainability objectives by way of championing improvements in early disease diagnosis, ameliorating the patient journey, reducing the disease burden in patients and their families, fostering meaningful research initiatives, promoting strategic collaborations and helping advance safe, effective and accessible disease-modifying therapies.
I am thrilled to collaborate with fellow board members, leveraging our unified interests and unique skills to advance NNPDF’s mission of supporting patients and families affected by Niemann-Pick disease.
Mother of Ryan, NPC | Chesapeake, VA
Christine’s Statement of Commitment:
I believe in NNPDF’s mission and vision and am honored to have the opportunity to serve the Niemann-Pick disease 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 Niemann-Pick disease and believe that with my experience I can help with bringing more hope by accelerating early diagnosis, new treatments and pushing for a cure.
Certified Case Manager, Licensed Independent Social Worker | Ashland, MA
Phoebe’s Statement of Commitment:
With nearly two decades of experience in patient services within the rare disease space, both as a NICU social worker and as a Case Manager in the pharmaceutical industry, I am excited about the opportunity to contribute to the mission of the NNPDF. As a social worker, I provided support to families after an unexpected diagnosis, guided families to resources and advocacy/support groups to help them feel less alone in their journeys, and served on the Family Advisory Council, collaborating with former NICU families to implement program changes to improve the experiences of current and future NICU families. As a case manager, I have been instrumental in launching innovative patient support programs and managing transitions from clinical trials to commercial drug access. I’ve built strong and lasting relationships with patients and providers, evaluated programs and made recommendations for improvement, and contributed to strategic planning and execution.
I am passionate about the NNPDF’s mission to support and empower patients and families impacted by ASMD and NPC through education, collaboration and research. I have seen first-hand the hope that comes from disease and treatment research and development, the empowerment that comes from education and advocacy, and the joy and community that comes from bringing together a group of patients and families with ultra-rare diseases to connect with and learn from each other.
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.
Served as Board Chair
Mother of Tyler, Katie, & Faith, NPC (In Memory)
Served as Board Chair
Father of Garrett, ASMD
THANK YOU to our former NNPDF Board Members with great appreciation for your years of service!
NNPDF’s Scientific Advisory Board (SAB) provides independent scientific, clinical, and regulatory expertise to help guide the organization’s leadership and advance its mission. The SAB also supports NNPDF’s efforts to strengthen research, encourage scientific and clinical professionals to enter the field, and ensure that educational and research initiatives are informed by expert perspectives.
NNPDF is deeply grateful to the members of our Scientific Advisory Board, who generously volunteer their time, knowledge, and expertise in service to the Niemann-Pick community.
Chair
Professor, Department of Pathology
University of Michigan Medical School
Division Chief, Metabolic Disorders Division
Children’s Hospital of Orange County
Attending Physician, Director of Inborn Error of Metabolism Program
Ann & Robert H. Lurie Children’s Hospital of Chicago
Professor, Departments of Pediatrics, Neurological Sciences, Anatomy and Cell Biology
Director, RUSH Pediatric Neurosciences F.A.S.T. Center for Translational Research
Rush University Medical Center
Staff Scientist, Porter Lab, NICHD
Member of SOAR Scientific Collaborative
National Institutes of Health, NICHD
Research Professor, Department of Chemistry and Chemical Biology
The University of New Mexico
Director, Pediatric Hematology Oncology Fellowship Program
NeuroOncology Program
Pediatric Hematology Oncology Department Chair, GME Committee
Children’s Hospital & Research Center Oakland
Professor of Clinical Medicine
Chief, Division of Hospital Medicine
University of Rochester School of Medicine and Dentistry
Senior Investigator and Associate Scientific Director for Translational Research
National Institutes of Health
Genetic Disease Foundation – Francis Crick Professor of Genetics & Genomic Sciences
Icahn School of Medicine at Mount Sinai
Department of Biology
Barnard College, Columbia University
Professor, Department of Pediatrics
Professor, Department of Genetics
Chief, Division of Pediatric Genetic Medicine, Department of Pediatrics
Montefiore Medical Center
Executive Director
Heather brings extensive leadership experience across healthcare, public health, patient advocacy, and nonprofit sectors. Following her son’s autism diagnosis, she redirected her career toward Education and Health Promotion, shaping a career focused on integrative health, early intervention, community health, and patient advocacy.
Heather has held leadership roles across healthcare, nonprofit, and global advocacy sectors, including Executive Director of The Healing Net Foundation, Chief Programs and Operations Officer at the Global Patient Advocacy Coalition for Headache, Director of Programs and Advocacy with the American Migraine Foundation, and leadership positions with MaineHealth, one of the nation’s top integrated healthcare delivery networks. Her work also includes collaboration with the World Federation of Neurology and the World Health Organization on global neurology, advocacy, and public health initiatives.
Throughout her career, she has led initiatives focused on community health, patient engagement, advocacy, and organizational growth, with expertise in scaling mission-driven programs and building collaborative partnerships that improve health outcomes and access to care.
Heather continues to contribute as a patient advocacy author and through service on local boards and global committees. A Northeast native, Heather now lives in Florida. She has three grown sons and enjoys spending time reading, walking and golfing, and traveling with her husband and friends.
Communications & Marketing Coordinator
Jill has served as Communications & Marketing Coordinator for the NNPDF for the past ten years. Her journey with the organization began in 2005 as a freelance graphic designer, where she created newsletter graphics and promotional materials. Those projects opened the door to learning about Niemann-Pick disease, the families impacted by it, and the critical research efforts underway. What began as a design project quickly became something much more personal as she found herself deeply connected to the community and its mission.
In 2016, Jill officially joined the NNPDF staff as Communications & Marketing Coordinator. In this role, she oversees communications and outreach efforts that connect families, researchers, advocates, and supporters across the Niemann-Pick community. She is honored to help share the voices, experiences, and progress that continue to drive hope and awareness for those affected by Niemann-Pick disease.
Jill lives in southern Wisconsin with her family. In her free time, she enjoys creating art, reading, biking, swimming whenever Wisconsin weather is warm enough to cooperate, and spending time with friends and family.
Family Services Manager
Allie has more than 10 years of nonprofit experience designing events and programs that support individuals and families navigating life with a rare disease. Prior to joining NNPDF, Allie worked at the Cystic Fibrosis Foundation where she led virtual community events designed to foster peer support and advance patient and caregiver education. She is passionate about helping people find connection, support, and reliable resources throughout their journeys.
As Family Services Manager, Allie serves as a primary resource for individuals and families affected by Niemann-Pick disease, helping connect them with information, support services, and community resources. She is committed to listening to families’ experiences, amplifying their perspectives, and developing programs that address the evolving needs of the Niemann-Pick community.
Allie lives in Western North Carolina and is a mom, dog lover, and outdoor enthusiast. Outside of work, she enjoys hiking, traveling, exploring the Blue Ridge Mountains, and spending time with family and friends.
We are committed to maintaining the highest standards of integrity, accountability, and transparency in all that we do. We believe in being responsible stewards of the resources entrusted to us and making our financial information accessible to the public. Our annual IRS Form 990 filings are available below for review.
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