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 lives in Montana with her husband and her 2 boys. Her eldest son, Oliver, was diagnosed with Beta-mannosidosis at the Mayo Clinic in Rochester, MN in 2014. He was the first patient diagnosed in the United States. This was the beginning of Laurel’s rare disease journey. In 2015, Laurel and Oliver moved to Minneapolis, MN, where Oliver underwent an experimental bone marrow transplant to help slow the progression of the disease. Since that time, Laurel has continued to advocate for Beta-mannosidosis awareness, inclusion, and advocacy. She was elected to the board of the International Society for Mannosidosis and Related Diseases (ISMRD) in 2022, helping connect rare patients and families around the world, and she arranged the inclusion of Beta-mannosidosis into the National Organization for Rare Disease (NORD) Rare Disease Database. In 2023, she co-founded The Lost Enzyme Project with those families diagnosed in the U.S. and is a co-host on the These Kids Can’t Wait podcast. She is a licensed mental health counselor and when not working, enjoys time spent with family and friends, flowers, travel, and music concerts.

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.

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.

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.

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 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 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.