In May of 2009, our 5 year old son Stephen was diagnosed with a horrible, degenerative and rare disease called MPS IV B, or Morquio B. It is one of approximately 17 disorders that falls under the name MPS, or Mucopolysaccharidosis.

This is not something a person comes across every day. In fact, most of the doctors we have had to visit for Stephen's various tests haven't seen a patient with this disease. More frightening, many have never even heard of this disease. We couldn't find any information when we tried to research it ourselves.

There is precious little funding out there for the treatment of rare diseases: cash-strapped governments see no political benefit and the pharmaceutical corporations see minimal profit potential. And yet, with a proper level of funding, many rare diseases would be treatable! Our son Stephen has one of those rare diseases. And indeed, there are therapies for some forms of MPS. Just not his. It didn't take us long to decide that it was our destiny to raise funds and awareness around the specific affliction of Morquio B – not to help just our son, but to offer hope for a better, longer life to a forgotten few around the world.

We are raising funds to support research in all areas of study relating specifically to MPS IV B (or Morquio B). It is our mission to raise funds for research and develop a better understanding of this disease. It is our hope that this research will lead to a treatment. In supporting UBC, 100% of all donations will go directly towards research efforts relating to this disease. As one of Canada's largest research institutions, UBC doctors and researchers have the passion and expertise to uncover the mysteries of Morquio B and advance our understanding towards a cure. We are very proud to be raising funds for UBC Medicine.

Your generous donations will support the work of Dr. Sylvia Stockler, Dr. Eduard Paschke, and Dr. Clara van Karnebeek. Dr. Stockler is an expert in pediatric metabolic diseases who has championed international research efforts on metabolic diseases. Dr. Paschke is heavily involved in pediatric metabolic disorders and made it a career-long interest to better understand how the gene GLB1 causes two metabolic diseases, one of which being Morquio B. Dr. van Karnebeek also specializes in metabolic diseases and recently completed her fellowship under the supervision of Dr. Stockler.

Dr. Stockler’s team recently received a significant grant to develop a patient registry for Morquio B. Since Morquio B is such a rare disease, this is the first step in unraveling some of its mysteries and working towards treatments and an eventual cure. The team hopes that a registry will clarify research targets and inspire international research collaboration. We are very excited for the outcomes of this great project.