Articles
10th International Symposium on Mucopolysaccharide and Related Disorders
The 10th International Symposium on Mucopolysaccharide and Related Disorders was recently held on Vancouver, Canada from June 26 – 29, 2008. The meeting was attended by 756 registered delegates and 78 volunteers, with 274 registered scientific delegates and 410 family, child, youth, and teen delegates. The theme of this year’s meeting was "Conquering MPS. Learn. Live. Cure." The hosts of the meeting, The Canadian MPS Society, brought together researchers, physicians, other health care professionals, and patients and their families from all over the world to discuss the latest advancements in the understanding, care and management, and treatment of all the MPS disorders and related lysosomal storage diseases.
At the meeting’s opening plenary session on Thursday, June 26th, Dr. John Hopwood presented the opening address, reviewing the key scientific advancements made in the MPS and related lysosomal storage disorders and the challenges that the clinicians, scientists, patients, and family members face in the future. Other invited speakers included Dr. Joseph Muenzer and Dr. Joe Clarke, who spoke of alternative treatment strategies, some of which are currently in practice and others which are still in development.
The focus of Friday’s scientific program was on understanding of the disease pathology of the MPS disorders. Invited speakers in the morning session addressed new discoveries and current knowledge about the underlying cause of the bone and connective tissue disease in MPS. The afternoon session focused on the neurological features of MPS. Friday’s scientific session ended with a presentation on the animal models and how they help us understand the health problems that develop in MPS disorders.
On Saturday, the focus of the scientific program was on the management and treatment of MPS disorders, including presentations on the latest research studies on treatment approaches. Exciting presentations included research currently investigating intrathecal enzyme replacement therapy for some of the MPS disorders. Other presentations discussed the advancements in gene therapy and current work performed on animal models. Additionally, there were a number of presentations on alternative treatments such as substrate inhibitors, substances that work to decrease the production or accumulation of glycosaminoglycans (GAGs).
The family program started on Friday with a series of lectures that were presented to help patients and families better understand the MPS disorders and the current recommended management and treatment. Dr. David Begley explained the difficulty in treatment of the neurological features of the MPS disorders due to the function of the blood brain barrier. And Dr. Mark Sands discussed the new investigational treatments that are currently in the research phase. The Friday afternoon and Saturday morning session presentations focused on living with MPS and related disorders. Topics of discussion included pain management, palliative care, recreational therapy, and easing the transition from childhood to adulthood. The invited speakers also included parents and patients who eloquently shared their experiences. The family program ended on Saturday with presentations on finding a potential cure for MPS.
Other highlights of the meeting including a butterfly release in the conference center garden in memory and celebration of the lives of those with MPS who have passed away. The Gala Dinner held on Saturday evening included the presentation of Life for MPS Awards to Dr. John Hopwood, well known for all of his work in the MPS disorders, and Mark Dant, father of Ryan who has MPS I, and founder of the Ryan Foundation. Mr. Dant and other members of the Ryan Foundation were instrumental in raising funds for the advancement of enzyme replacement therapy in MPS I. The symposium ended on Sunday with a joint family and scientific session on the latest advancements in newborn screening for MPS and related disorders.
While the adults were attending the conference programs, the child, youth and teen delegates had a wonderful opportunity to attend Camp Canada and Camp Adventure. Seventy-eight volunteers provided on-site activities for patients, siblings and other young attendees to the meeting as well as coordinated site-seeing activities around Vancouver. Fun activities included a dinner and social, arts and crafts, and trips to the Vancouver Aquarium and Grouse Mountain. The teens were also challenged to participate in a rope climbing course.
The exciting presentations at the 10th International Symposium on Mucopolysaccharide and Related disorders revealed how far we have advanced in the past two years since the 9th International Symposium in Venice, Italy. Meetings such as the International Symposium provide opportunities for scientists and families to collaborate and learn from each other’s experiences and expertise. The 11th International Symposium will be held in June 2010 in Adelaide, Australia. We hope to see you all there.
Acknowledgement:
We would like to thank the organizers of the 10th International Symposium on Mucopolysaccharide and Related Disorders, the Canadian MSP Society and Advanced Group Conference Management, for providing us with the number of registered delegates and for the use of the Symposium logo.