CANADIAN ADULT CONGENITAL HEART NETWORK


	News & Events The Beat Newsletter CCHA Message Centre			There are more than 180,000 Canadian children and adults with congenital heart defects (CHD) who need your help. The Canadian Congenital Heart Alliance (CCHA) is a volunteer-run organization made up of patients with a congenital heart defect, their friends, families, and the medical community. With your support, we aim to improve the quality of care for these patients, many of whom require lifelong expert care. CCHA was founded in 2004 to support all Canadians with CHD. One of immediate goals is to raise the profile of adult congenital heart disease in Canada, due to the current lack of funding and support. We want to ensure adult CHD patients receive the same excellent standard of care as children and at the same level as non-congenital cardiac patients. CCHA has the strong support of CACH as well as congenital heart healthcare professionals across Canada. Meet the CCHA Executive The current executive consists of seven adult CHD patients, under the strong leadership of our President John MacEachern, the first Canadian to survive life-saving heart surgery in the 1940s. John MacEachern – President Shelagh Ross – Vice president Paula Andrade – Secretary Dr. Bill Williams – Retired pediatric cardiovascular surgeon Dr. Bob Lowrie – Father of patient Some facts about congenital heart defects in Canada CHD is the world's leading birth defect. About 1 in 100 Canadian children are born with CHD. In the past, few made it past their teens. Now, approximately 98% make it to adulthood – resulting in a growing population of young adults who require life-long cardiac care. Across Canada, there are an estimated 100,000 adults with CHD (outnumbering CHD-affected children). At least half face the prospect of complications, multiple surgeries, and/or premature/sudden death. There are more Canadians with CHD than there are with Parkinson's disease (100,000), multiple sclerosis (75,000), HIV/AIDS (58.000), cerebral palsy (50.000), or cystic fibrosis (3,600), and yet there is very little awareness, research, or funding. There are far fewer resources allocated for the care of adult CHD patients than other cardiac patients. As a result, wait times for clinical visits and surgical intervention are much longer than for other cardiac patients – leading to increased anxiety, added risk and even death. In Canada there are 15 regional facilities to treat adults with CHD – with five designated as "Centres of Excellence". There are seven cardiologists in Canada who have specifically trained in the field of adult congenital heart defects. Research in the area of adult CHD has not reached the level of sophistication observed in other areas of heart disease research – even though CHD-related research has the potential for greater impact. Advisory Board Members *Chair:* Erwin Oechslin MD, FESC - Director, Toronto Adult Congenital Clinic (TACCC) *Members:* Erwin Oechslin , FESC - Director, Toronto Adult Congenital Clinic (TACCC) Candice Silversides MD, MS, FRCP (C), FACC - Cardiologist at TACCC specializing in Women's issues with CHD; Vice President, CACH Network Arianne Marelli FRCP (C) FACC - Associate Professor of medicine at McGill University; Director, MAUDE Unit (McGill Unit for Congenital Heart Disease) Judith Therrien MD, FRCP (C) - Cardiologist at Montreal's Jewish General Hospital, McGill University; President of CACH Network Andrew Redington MB, BS, MRCP (UK), MD, FRCP (UK), FRCP (C) - Director of Cardiology for the Hospital for Sick Children, Toronto *Liaison Advisory Board Member:* Gary Webb MD - Professor of Medicine at the University of Pennsylvania, Director of the Philadelphia Congenital Heart Clinic, and Chair of the Medical Advisory Board to the American Adult Congenital Heart Association. Some of our accomplishments so far… Guaranteed life insurance without a medical for patients 20 years of age and older, low cost travel insurance which covers pre-existing conditions for patients of any age, and dental plan coverage. "Beat Retreat" camp for adults in 2009 and 2010 Development of a state-of-the-art website Partnership with Adult Patient Conference Toronto Congenital Cardiac Centre for Adults in hosting the annual Patient Conference held in Toronto each year in May Development of chapters in some provinces across Canada Participation in Sick Kids and IWK (Halifax) transition information sessions and Family Education days The development of the CCHA Advisory Board Collaboration with international adult CHD groups and founding of the International Congenital Heart Coalition Negotiated with Heart & Stroke Ontario to fund $100,000 for an adult CHD research project How You Can Help Donate by click the CanadaHelps link on the home page of www.cchaforlife.org or by sending a cheque to: CCHA C4-233 Cross Avenue, P.O. Box 233 Oakville, ON L6J 2W9 For more information, please visit www.cchaforlife.org