WORLDSymposium Announces Mark Dant As Recipient of the 2019 Patient Advocate Leader (PAL) Award

Mark Dant, EveryLife Foundation for Rare DiseasesEach year, WORLDSymposium recognizes one individual for patient advocacy leadership in the field of lysosomal disease. The 2019 Patient Advocate Leader (PAL) award will be presented to Mark Dant, the current Chairman of the Board of the Washington DC-based EveryLife Foundation for Rare Diseases, a science-based advocacy organization dedicated to accelerating biotech innovations for rare disease treatments through science-driven public policy. Mark is also the founder and Volunteer Executive Director of the Ryan Foundation and former President and CEO of the National MPS Society.

In 1992, while working as a police officer in the Dallas area, Mark and his wife Jeanne founded The Ryan Foundation with a bake sale after their only child, three-year old Ryan was diagnosed with MPS I. At that time, life expectancy for children with MPS I was less than 15 years. Mark began an immediate global search for scientists and philanthropists who might aid in finding a treatment in time to help children and families living with MPS realize the promise of tomorrow. A conversation with a research scientist at a symposium in Dusseldorf Germany eventually led Mark to Dr. Emil Kakkis, a young researcher at UCLA who was working on a project to help treat MPS, but had little funding. The Ryan Foundation partnered with Dr. Kakkis and provided key funding for his project, which culminated in the development of laronidase, the first and only drug currently approved to treat MPS I. Ryan, now 30 and a graduate of the University of Louisville, is the longest treated person in the world with MPS I. Since the bake sale, the Ryan Foundation has funded millions of dollars in rare disease research.

For the past 25+ years, Mark and the Ryan Foundation have partnered with numerous research scientists and universities to help innovative projects move toward treatment in lysosomal storage disease; to include the essential published laboratory work which provided proof of concept for Intrathecal Enzyme delivery in lysosomal storage disease. Mark and his family have been key advocates speaking to the FDA and in 2009 successfully championed the US House of Representatives to pass the Ryan Dant Health Care Opportunity Act, a bill designed to help those living on Medicaid assistance become gainfully employed. The Dant’s journey has been documented on CBS 60 Minutes, CNN, Biography Magazine, Readers Digest in 13 languages around the world, Golf Digest, the LA Times and numerous newspapers and news outlets across the US.

Mark retired from police work in 2016 as Assistant Chief of Police after serving 32 years as a Patrol Officer, Detective, and Commander leading multiple divisions and Bureaus to include Patrol, Criminal Investigations, Intel, and SWAT. Mark spends his time now volunteering for the EveryLife Foundation, the Ryan Foundation, and numerous other rare disease organizations to help empower the patient advocate through the understanding that all of us have the power to turn action to hope and hope to reality. Mark’s message is that it is not the entity, but the individual who holds the responsibility to make true change.

On Wednesday, February 6, 2019 at 7:30 AM, Mark will be presented with the WORLDSymposium 2019 Patient Advocate Leader Award.

About the WORLDSymposium Patient Advocate Leader (PAL) Award

WORLDSymposium’s Patient Advocate Leader (PAL) Award program began in 2016 in order to recognize individuals contributing directly to lives of patients and families dealing with a lysosomal disease through disease awareness and education, community mobilization, non-profit development and/or good governance activities, patient care, and support programs. The recipient is presented with an engraved award and is recognized at the WORLDSymposium scientific meeting held annually in February each year. An announcement of the award recipient is included in the February special lysosomes issue of Molecular Genetics and Metabolism. (This award is given on a yearly basis, but can be omitted in any given year at the discretion of the Planning Committee.) Nominations are solicited annually from members of the lysosomal disease community, planning committee members and attendees of WORLDSymposium.

Past Award Recipient:

2016 Barbara Wedehase
2017 Christine Lavery
2018 Jack Johnson