The Lost Enzyme Project Team
Founders
Nathan and Erin Hubbard
Co-founders
Nathan and Erin Hubbard are co-founders of The Lost Enzyme Project. As parents of five children, one of whom is affected by Beta-Mannosidosis, they are passionate about raising awareness and advancing research for rare diseases. Through The Lost Enzyme Project, they work to connect patients, families, and researchers, fostering a community focused on hope, education, and progress.
Both also serve on the board of the International Society for Mannosidosis & Related Diseases (ISMRD) as secretary. Nathan is a Certified Public Accountant (CPA), and Erin is a dedicated advocate for rare disease research and community support.
Laurel Gregier
Co-founder
Laurel is a CS/CL Behavioral Specialist who lives in Montana with her husband and her two sons. In 2014, her eldest son, Oliver, became the first person diagnosed with Beta-mannosidosis in the United States—marking the beginning of Laurel’s journey in rare disease advocacy. In 2015, Laurel and Oliver relocated to Minneapolis, MN, where Oliver underwent an experimental bone marrow transplant aimed at slowing the progression of the disease. Since then, Laurel has remained deeply committed to advancing awareness, inclusion, and advocacy for Beta-mannosidosis.
Laurel was elected to the Board of Directors for the International Society for Mannosidosis and Related Diseases (ISMRD) in 2022, connecting rare patients and families around the world, and represents the ISMRD in the Global LSD Collaborative. In 2023, she arranged the inclusion of Beta-mannosidosis into the National Organization for Rare Disease (NORD) Rare Disease Database and co-founded The Lost Enzyme Project alongside other U.S. families affected by Beta-mannosidosis. She also co-hosts the podcast, These Kids Can’t Wait, which explores the urgent realities of living with rare diseases, while highlighting science, policy, and personal stories driving progress towards treatment.
Robert and Lorena Lomelin
Co-founders
Robert and Lorena, both native to Southern California, are proud parents of two children. A few years ago, their son, Dean, was diagnosed with beta-mannosidosis following an unexpected onset of hearing
loss. Motivated by their son’s journey, they co-founded The Lost Enzyme Project, a nonprofit dedicated to finding a treatment and eventual cure for beta-mannosidosis, while also advocating for increased awareness and federal research funding for all rare diseases. Robert is an Executive Chef at a leading multinational technology company, and Lorena works as an Environmental Health and Safety Professional at a prestigious California research university. Together, they are driven by a shared commitment to both their family and the broader rare disease community.
Fernando Fernandez
Development Officer
Before moving to Arizona in 2001, Fernando spent his early years in both Mexico and Texas. He and his wife are proud parents of two children. In 2025, their oldest son, Marco, was diagnosed with Beta-mannosidosis — a life-changing moment that set Fernando on a new path. With his passionate and solutions-driven mindset, Fernando took action the very same day Marco was diagnosed. He joined The Lost Enzyme Project, determined to make a meaningful impact in the world of ultra-rare disease advocacy and help drive critical fundraising efforts. Fernando currently serves as the Director of Supply Chain for a leading global technology company. Outside of work, he enjoys spending time outdoors — camping, hiking, snowboarding, and making memories with friends and family.
Scientific Advisory Board
Dr. Virginia E. Kimonis
Lead Researcher
The Lost Enzyme Project is proud to welcome Dr. Virginia E. Kimonis to our Scientific Advisory Board.
Dr. Kimonis is an internationally renowned clinician-scientist and geneticist and serves as the lead researcher for The Lost Enzyme Project, where she is leading preclinical efforts to develop a novel treatment for Beta-Mannosidosis.
She is the head of the Kimonis Lab at the University of California Irvine and a board-certified UCI Health clinician specializing in genetics and clinical biochemical genetics. Her work focuses on the diagnosis and treatment of children and adults with complex neuromuscular, neurodegenerative, and rare genetic disorders.
Dr. Kimonis has authored or co-authored 175+ peer-reviewed publications, with research centered on lysosomal storage diseases, inherited muscle disorders, and rare conditions. Her expertise includes Pompe disease, Prader-Willi syndrome, inclusion body myopathy, craniosynostosis, and related disorders.
She completed her medical degree at the University of Southampton Medical School, pediatric residency at Massachusetts General Hospital, and fellowship training in clinical and biochemical genetics at the National Institutes of Health and Children’s National Hospital.
Recognized as a Physician of Excellence, Dr. Kimonis is deeply committed to patient-centered research. Her leadership is helping move enzyme replacement therapy for Beta-Mannosidosis closer to reality—bringing hope to children and families who urgently need treatment.
Samantha Behunin
Science Liaison & Patient Identification Specialist
Dr. Samantha Behunin is a physiologist with a PhD in physiology and a minor in pharmacology. Her doctoral research focused on cardiovascular biophysics and metabolism. Drawn to the study of cellular energetics, she went on to complete a fellowship in translational cancer biology, where she investigated cellular energetics in non-small cell lung cancer.
She currently works with The Lost Enzyme Project, where she has been establishing a genomic analysis program that integrates cutting-edge genomic technologies into biomedical research and patient-focused studies. Leveraging her expertise in physiology, pharmacology, and molecular biology, she is actively applying these tools to identify new Beta-Mannosidosis patients, advancing both diagnosis and research into this rare condition.
Outside of her professional pursuits, Dr. Behunin is a devoted mother and wife, with her family serving as her greatest source of inspiration and fulfillment.
Jenny Jackson
Scientific Advisor
Jenny is a rare disease patient living with Mucolipidosis type III alpha/beta and a research scientist currently serving as Director of Program Management and Operations at Odylia Therapeutics, as well as President of ISMRD (International Society for Mannosidosis & Related Diseases). She earned her undergraduate degrees in Human Biology and Psychology and a Master’s degree in Physiology from North Carolina State University.
With more than eight years of experience in the biotech industry, Jenny has contributed to the development of small molecule, enzyme replacement, and gene therapy programs across a wide range of rare disease indications, including multiple lysosomal storage disorders. Her unique combination of lived experience and scientific leadership brings invaluable perspective to our mission.
Team Members
Trevor Hubbard
Chief Information Security Officer
Trevor is a Chief Information Security Officer with over two decades of professional IT and cybersecurity experience across civilian, government, and military environments. His career has focused on strengthening security programs, managing risk, and protecting critical systems in high-stakes operational settings. He holds a Bachelor of Science in Finance and a Master of Science in Cybersecurity, combining deep technical expertise with strong business and governance perspectives. He is committed to advancing the secure and mission-driven use of technology in service of The Lost Enzyme Project.
Alex Ju
Podcast Producer
Alex is a Film Production graduate from Loyola Marymount University with a passion for creating stories that inspire and entertain. Growing up in South Korea, China, and the U.S., he brings a unique global perspective to every project. Whether it’s through film, podcasts, or sound design, Alex loves crafting content that connects people and sparks meaningful conversations. When he’s not working, you can find him diving into the world of films, exploring new cuisines, or hiking.
Emma Luptak
Program Manager & Patient Advocacy Specialist
Emma is the Program Manager and Patient Advocacy Specialist at The Lost Enzyme Project. She is graduating in the spring of 2025 from the University of Wisconsin-Madison with degrees in Human Development & Family Studies and Health Promotion & Health Equity along with a certificate in Health Policy. After graduation, Emma is pursuing her Master of Public Health with a concentration in Health Policy & Administration back in her hometown at the University of Illinois-Chicago. She believes in making healthcare more accessible to everyone, especially when it comes to rare diseases. With a focus on patient advocacy, Emma works to ensure that the voices of patients and their families are heard and that they have the support they need to navigate the healthcare system.
Ivy Wang
Web Developer
Ivy graduated from Arizona State University in 2025 with a BS in Computer Science. After graduation, she began pursuing a Master’s degree. With a passion for web development, she strives to advance The Lost Enzyme Project’s fundraising efforts through intuitive website design. Outside of work, she enjoys spending time with her dog and two cats.
Arman Memarzadeh
Communications and Advocacy Specialist
Now a Communications student at ASU, Arman has refined his focus toward policy-driven work and organizational growth. He believes in championing causes that demand the spotlight, using his background in performance and his expertise in strategy to bridge the gap between empathy and action. Whether it’s refining policy messaging or building organizational capacity, Arman is committed to work that moves the needle on meaningful issues.
Marcella Pietrzyk
Grant Writer
Marcella Pietrzyk graduated from the University of Wisconsin-Madison in 2025 with a B.S. in Global Health and a certificate in Health Policy. She is currently pursuing a Master of Public Health with a concentration in Health Policy and Administration, along with a certificate in Health Disparities Research at the University of Illinois-Chicago. She is dedicated to reducing health inequities through policy change, advocacy, and expanding access to sustainable funding, with a particular focus on supporting individuals and families affected by chronic illness and rare diseases. In her spare time, she likes to volunteer with the American Red Cross, where she supports community health initiatives by teaching CPR classes and leading youth preparedness programs.
Olivia Buckel
Communications Specialist
Olivia Buckel is a senior at John Carroll University in Cleveland, OH. She is graduating in May 2026 with a degree in English and Professional Writing. Passionate about effective communication and the power of words, Olivia is excited to contribute to the social media and communications side of TLEP. After graduation Olivia hopes to work in professional communications full-time in Cleveland, OH.
