CANADIAN ADULT CONGENITAL HEART NETWORK


	The Beat Newsletter Archive 2009/2010 TCCCA update Winter 2009 Many things have happened at the Toronto Clinic over the last few months. We have said goodbye to some... + read more CCHA Updates Winter 2009 First ‘Beat Retreat’ camp a big success More than a dozen adult CHD patients – along with a cardiac care nurse... + read more Anxiety Winter 2009 The quiet agony of worry, so far, insidiously confined internally, first in tightness, in shallow breaths, in fearful ‘I wonder’,... + read more Hypertrophic Cardiomyopathy and Genetics Winter 2009 Recently I attended the conference, “Diagnosis and Management of Hypertrophic Cardiomyopathy and Prevention of Sudden Death: The Next 50 Years”,... + read more -------------------------------------------------- Sign-Up for Updates First Name Last Name Email Address Click here to unsubscribe			PRINT ARTICLE CCHA Updates Season: Winter 2009 Submitted By: Ted Thaler, CCHA, Outreach & Research First ‘Beat Retreat’ camp a big success More than a dozen adult CHD patients – along with a cardiac care nurse practitioner – turned out at beautiful Camp Quin-Mo-Lac, north of Belleville, Ontario, for the Canadian Congenital Heart Alliance’s (CCHA’s) first annual Beat Retreat. During the three-day event, ‘campers’ participated in a wide range of traditional camp activities, including campfires, canoeing, archery, climbing wall, initiatives course, crafts, yoga, volleyball, and even a polar bear dip. Activities were structured so campers could participate based on their physical ability and comfort level – with plenty of ‘down time’ thrown in for socializing and relaxing. Based on the overwhelming success of the retreat, the CCHA is already making plans for the next retreat. If you know of a CHD-er who would like to participate in a little camp craziness and enjoy a new experience, tell them to send us an email at thebeatretreat@cchaforlife.org. ‘CHD Awareness Day’ one step closer in Ontario Ontario is one step closer to declaring February 14 ‘Congenital Heart Disease Awareness Day’ after the Ontario legislature gave second reading to Bill 178. Second reading of the Bill – a private members Bill introduced by MPP Dr. Helena Jaczek (Oak Ridges-Markham) – received the unanimous approval of the legislature on November 26, 2009. Representatives from the Canadian Congenital Heart Alliance (CCHA), Toronto Congenital Cardiac Centre for Adults and Sick Kids Hospital were on hand to show their support for the proposed legislation and Dr. Jaczek. In presenting the Bill for second reading, Dr. Jaczek spoke about the challenges faced by CHD patients and healthcare providers, and the importance of increased awareness. Several other MPPs also spoke in support of the proposed legislation. The Bill is now headed to the Standing Committee on Social Policy for review. If all goes as planned, it should receive third and final reading later this year before becoming law. CCHA builds connections at Cardiovascular Congress The Canadian Congenital Heart Alliance (CCHA) made the most of the 2009 Canadian Cardiovascular Congress in Edmonton. During the multi-day event – held this past October – CCHA patient volunteers ‘manned’ an attention-grabbing booth promoting awareness of CHD and the CCHA. They also took the opportunity to forge new links with healthcare professionals and lay the groundwork for new regional chapters. (Special thanks to the Heart and Stroke Foundation of Ontario for picking up the CCHA’s expenses for booth space and exhibitor fees). While in Edmonton, CCHA board members John MacEachern and Ted Thaler were invited to attend the annual meeting of the CACH Network, updating the group on a wide range of CCHA initiatives. *CCHA hosts inaugural meeting of ICHC* The Canadian Congenital Heart Alliance (CCHA) hosted the inaugural meeting of the International Congenital Heart Coalition (ICHC) this past October. CHD patient groups from 14 countries were represented at the three-day meeting, held at the Royal York Hotel in Toronto. The meeting was the culmination of more than 18-months of planning by John MacEachern, CCHA president and founding chair of the ICHC, and Amy Verstappen, president of the U.S.-based Adult Congenital Heart Association (ACHA). The organizers received encouragement from Dr. Erwin Oechslin of Toronto, Dr. Michael Landsberg of Boston, and Dr. Barbara Mulder of The Netherlands. The ICHC was created to help groups from around the world work together to promote CHD awareness and improve health outcomes for CHD patients. The ICHC currently boasts 21 member organizations. For more information on the ICHC, go to www.ICHConline.com. *CCHA takes part in Sick Kids’ CHD Education Day* The Canadian Congenital Heart Alliance (CCHA) took part in the Sick Kids’ Family Education Day on September 12. More than 150 children with CHD and their families turned out to learn more about living with CHD. CCHA board members Shelagh Ross and Ted Thaler were asked to share what it’s like to grow up with CHD. Several CCHA members, including Ted, Shelagh, Toby Cox, and Lori Constable-Smolcic facilitated small discussion groups for parents wanting to share experiences and concerns. Throughout the day the CCHA operated a booth providing information on CHD and CCHA activities and programs. *CCHA social gatherings* There’s no point in letting a congenital heart defect get in the way of a good time! At least that’s the attitude of a growing number of CHD-ers who are turning out for CCHA-sponsored social gatherings. During 2009, the CCHA organized six social gatherings in the Toronto area, including a bowling night, pub night and evening of Korean food. The CCHA is currently lining up a number of social activities for 2010, including karaoke, laser tag, indoor beach volleyball, and possibly even a casino night. Social gatherings are intended to provide CHD-ers – including family members and significant others – with an opportunity to get together, make new friends, share experiences… and generally have fun. Anyone interested in joining in on the fun can check out the CCHA website (www.cchaforlife.org) or email tthaler@cchaforlife.com.