Toronto Marfan Syndrome Information

The Canadian Marfan Association if conjunction with The Hospital for Sick Children hosted a Marfan Information Day for patients and families on September 30th, 2006. The event brought together Marfan experts from across North America representing all major relevant medical specialties. The day was well attended by members from the Greater Toronto Area and from Ontario. Dr. Timothy Bradley, Staff Cardiologist from Sickkids began the day with an overview of the diagnostic criteria and considerations from children with Marfan Syndrome.

Dr. Reed Pyeritz, Professor of Medicine & Genetics at the University of Pennsylvania School of Medicine spoke in depth about the adult features of the syndrome.

Dr. Hal Dietz, Professor of Paediatrics, Medicine & Genetics at John Hopkins University, Baltimore led on the of the most dramatic and poignant sessions of the day as he presented his ground-breaking research on Losartan on Marfan mice and the astonishing results achieved.

Dr. Nanette Alvarez, Adult Cardiologist from the Peter Longheed Hospital in Calgary, presented an overview of the lifestyle considerations that should be addressed by those with Marfan Syndrome. Lindsey Rusche, a member of the CMA Board of Directors led a sharing of ideas with the group about strategies for coping with the syndrome and its lifestyle challenges. Lindsey opened up the floor to solicit ideas from the audience for other topic areas that they may want to see included in future information days. Suggestions included; targeted children’s and young adult breakout sessions to specifically address their emotional/coping needs, more access to resources and information for children/young adults online, as well as more time for workshops/seminars to share and promote mutual support in the Marfan community.

Following a lunch break and Annual General Meeting for the association, Dr. Asim Ali, Ophthalmologist, from The Hospital for Sick Children, discussed the eye issues and management for Marfan patients. Dr. David Chitayat, Professor of Paediatrics, Genetics & Laboratory Medicine at the University of Toronto reviewed the process of genetic testing for the syndrome and prenatal diagnosis.

We also had the pleasure of welcoming the Toronto Cardiac surgeon, Dr. Tirone David who developed the valve sparing technique now widely used during ascending aortic root replacements in patients with Marfan Syndrome. Dr. David provided an overview of the cardiac features and surgical management of the syndrome. This topic was followed by the announcement of the Losartan drug trial by Dr. Timothy Bradley and Dr. Hal Dietz.

The medical expects were a real source of information, inspiration and hope for all those who attended. The CMA is already planning next year’s event and hope to develop a more accessible and robust event in 2007. It was a great honour and pleasure for us to host these prominent medical professionals and applaud their dedication to improving the lives those with Marfan Syndrome.

We would also wholeheartedly like thank all the volunteers and sponsors who helped make the day possible. They are Tim Hortons, Faps Inc., Tall Girl, Merck Frosst, Staples Business Depot, A&P, AstraZeneca, Innovative Foods Corporation, Dr. Carlo Meola & Mrs. Janet Coomes, Michelle Reid, Raymond Lam, AAK Canada Ltd, and Jim Mercer Productions. Thank You.