A powerful connection spanning more than three decades of rare disease research came full circle at the 2026 Bay Area Biotech Forum, hosted by the San Francisco Business Times, when Dr. Emil Kakkis was honored with the forum’s prestigious Lifetime Achievement Award.
Representing the Muenzer MPS Research & Treatment Center, Ryan Dant, Public Communication Specialist and patient advocate living with MPS I, presented the award in recognition of Dr. Kakkis’ extraordinary contributions to the rare disease community. For Ryan, the moment reflected both a personal journey and the ongoing mission of the MPS Center to advance research, improve care, and connect families with life-changing resources and opportunities.
The recognition was especially meaningful to the MPS Center community because of the longstanding connection between Dr. Kakkis and Dr. Joseph Muenzer, Director of the Muenzer MPS Research & Treatment Center. More than 30 years ago, Dr. Muenzer and Dr. Kakkis collaborated on the development of the first enzyme replacement therapy clinical trial for MPS I. Their pioneering work helped pave the way for the approval of Aldurazyme® and transformed the outlook for patients and families around the world.
Dr. Kakkis, founder and CEO of Ultragenyx Pharmaceutical, has dedicated his career to advancing therapies for individuals living with rare and ultra-rare diseases. His work has helped drive the development of numerous treatments and has inspired generations of researchers, clinicians, advocates, and families throughout the rare disease community.
During the presentation, Ryan reflected on his own journey as a person living with MPS I and the profound impact that rare disease research has had on his life. Ryan
participated in the early clinical development of Aldurazyme and is the longest-treated patient in the world receiving the therapy, having received treatment for more than 28 years.
Ryan also highlighted the important work being done at the Muenzer MPS Research & Treatment Center and the Center’s commitment to advancing research, improving patient care, and supporting families affected by MPS and related lysosomal storage disorders.
Serving as a member of the MPS Center team represents a meaningful full-circle moment for Ryan. As a patient who directly benefited from the groundbreaking work of Dr. Kakkis, Dr. Muenzer, and many others in the rare disease community, he now has the opportunity to help connect patients and families with the Center’s clinical care, research opportunities, educational programs, and support resources.
“To stand on stage honoring Dr. Kakkis while representing the MPS Center was incredibly meaningful,” Ryan said. “The research that Dr. Kakkis and Dr. Muenzer helped lead changed the course of my life. Today, I have the privilege of helping connect other patients and families to the same type of care, research opportunities, and support that have made such a difference for me.”
The event highlighted the power of collaboration among patients, families, researchers, clinicians, and industry leaders working together to advance treatments for rare diseases. It also underscored the importance of ensuring that patient voices remain central to discussions about research, drug development, and healthcare innovation.
The Muenzer MPS Research & Treatment Center congratulates Dr. Kakkis on this well-deserved honor and thanks the Bay Area Biotech Forum for recognizing his extraordinary contributions to the rare disease community. Through research, advocacy, and collaboration, leaders like Dr. Kakkis continue to help shape a brighter future for individuals and families affected by rare diseases worldwide.