Morquio B: A Commitment to Finding a Cure

Priest Family

Morquio B: A Commitment to Finding a Cure

In 2009, Dan and Tina Priest received the devastating news that their son, Stephen, had a rare genetic condition called Mucopolysaccharidoses (MPS) IV B, or Morquio B. This illness has no known cure and affects an estimated 1 in 200,000 people around the world. Among other symptoms, it can lead to cardiac problems, clouded vision, bone and joint malformations, and even early death. Since the disease is so rare, there has been little funding from either government or pharmaceutical companies to search for a treatment. Instead of giving up hope, the Priests decided to focus on finding a solution by raising money and awareness to help Stephen and those like him.

About This Project

Stephen’s physician and principal investigator, Dr. Sylvia Stockler, Professor and Head of the Division of Biochemical Diseases in the UBC Department of Pediatrics, is leading the research to develop a better understanding of Morquio B. Together with Dr. Stockler, the Priests have started to compile valuable patient information for the world’s first comprehensive registry of Morquio B. The registry aims to capture all the cases of Morquio B worldwide. While it will provide scientists with a wealth of knowledge, this information could also create a critical mass of data that may help raise government and industry awareness of Morquio B. The registry will also facilitate future clinical trials by enabling communication between researchers, patients, and physicians.

We encourage you to consider supporting Dr. Stockler and her team of talented researchers to uncover the mysteries of Morquio B, and advance our understanding towards finding a cure.

Project Contacts

Need Help?

Phone 604.827.4111 or toll-free in North America 1.877.717-GIVE

Charitable business # 10816 1779 RR0001

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