For more information about their organization, please click HERE.

There is an article about CCHA’s Beat Retreat camp on page 10 and an article about camp organizer and long-time CCHA volunteer Toby Marchegiano. The entire newsletter is worth reading from cover to cover!

HeartBeatsWinter2012

Please click on the PDFs for more information, and the links to register:

Post-Mustard and Senning in the adult CHD patient

Eisenmenger Syndrome in the ACHD patient

For a complete list of webinars, please click on the “Webinars” link  on the  Home page menu.

With 2011 coming to a close, we want to let you know what we’ve been up to. It’s been a busy restructuring year for us – revisiting where we’ve been successful and not as successful, and where we want to be this time next year. Our main goal is to raise awareness about congenital heart defects (CHD) and the need for lifelong care. As kids transition to adult care it is important for them to know that CHD lasts a lifetime, and that regular follow-up at one of the 15 adult CHD specialist clinics in Canada will allow them to get the best care possible. Right now, only about one-quarter of adult CHD patients are being seen by a cardiologist specially trained in adult CHD. That means that most CHD patients either aren’t being seen at all, or are being followed by a cardiologist who may have little or no training in congenital heart defects. We want to make sure that all of us live as long and healthy lives as possible.

We are the only national organization that provides lifelong advocacy and support for CHD patients and their families, and we’re all volunteers. Please help us by donating and spreading the word!

February 14 as Congenital Heart Awareness Day

The CCHA is looking to “go all the way” next time with efforts to have February 14th declared Congenital Heart Awareness Day.

In 2009, we came close. A Bill made it all the way through second reading in the Ontario Legislature, gaining the full support of all three parties. At that point, however, the MPP who was championing the Bill was moved to a different portfolio, and the momentum was lost.

Now we’d like to get the ball rolling again. With that in mind, we are urging all of you to contact your MPP – regardless of province of residence – and ask him/her to propose a new Bill.

To help to do just that, we’ve posted a template on our website that you can use to quickly draft a letter or email to your MPP. To access the template, click here.

Sending off a letter or email will take you only a few minutes – but the payoffs could be significant when it comes to raising awareness of congenital heart issues. If you have questions, please contact us at communications@cchaforlife.org and we’ll be happy to help.

CCHA raises funds in the Cardiac Health Foundation of Canada’s “Walk of Life”

Team CCHA and The Slow Pokes walked in the Cardiac Health Foundation of Canada’s “Walk of Life” last May helping to raise more than $6,000. This amount was split 50/50 – with half going to the CCHA and half to the foundation.

The Cardiac Health Foundation of Canada is a charitable organization dedicated to “supporting cardiac rehabilitation and the advocacy of prevention and education across Canada.” Since 1965, the organization has raised $10 million nationally for facilities, scholarships and research, patient and public awareness, professional education, and medical equipment. For more information, visit www.cardiachealth.ca.

Many congenital heart patients take advantage of the foundation’s rehab programs to help them exercise safely under supervision.

This year’s Walk of Life – through ET Seton Park in Toronto – was hugely successful. Team CCHA’s 18 participants raised over $5,000, while the five members of The Slow Pokes team raise $1,300 – for a grand total of $6,464.

A big thanks to the members of Team CCHA: Toby, Shelagh, Lori, Debbie, Denise, Elizabeth, Mike, Cindy, Ben, Marietta, Tania, Emma, Mike, Cathy, Luigi, John, Aki, and team captain Jennifer. Thanks as well to The Slow Pokes team: Chris, Reagan, Lauren and team captain Dee. Great job everyone!

We’re looking forward to an even bigger turnout at next year’s event. It’s a great way to raise funds, get exercise, AND meet fellow heart friends.

Beat Retreat “3″ – the champ of camps

A record number of adult CHD patients – aged 19 to 61 – turned out in September for the third annual Beat Retreat – a retreat for adult CHD patients sponsored by the Canadian Congenital Heart Alliance.

Over the course of the three-day event, which is held at beautiful Camp Quin-mo-lac near Madoc, Ontario, “campers” had an opportunity to try – at their own pace – a full range of camp activities.

“Archery, canoeing, crafts, scavenger hunt, climbing wall, initiatives course, campfires, kangaroo court – you name it, we offered it,” says Camp Coordinator Toby Cox, “We even had a handful of campers who braved early morning temperatures of 4 degrees C for a polar bear dip.”

Through it all, there was no shortage of smiles as campers made new friends, took on new challenges, and got caught up in the camp spirit.

“Too often, a lack of public understanding, opportunity or confidence prevents CHD patients from enjoying many of the life experiences enjoyed by their peers,” says CCHA Board Member and veteran retreater Ted Thaler. “The Beat Retreat works to change that by giving these individuals an opportunity to try new things and challenge themselves in a controlled setting.”

“I’ve seen campers with tears welling up in their eyes because they’ve never even met another CHD patient before let alone had the chance to share experiences with someone who has faced similar challenges,” he says. “It can be a cathartic experience.”

Although it takes a whole team of volunteers many months to organize and prepare for the annual retreat, Thaler has no doubt it’s all worth it. “Especially when you see a smile cut across the face of a camper who has tried something they never in their wildest dreams thought they’d ever get to try because of their medical history. All of a sudden they have a new-found sense of accomplishment and confidence.”

This year, two nurse practitioners that specialize in congenital heart disease joined the roster of attendees. They provided campers with tips and suggestions for living with CHD; in return, they had an opportunity to hear first-hand about the many challenges adult CHD patients face.

Organizers are already bandying around ideas for an even bigger and better Beat Retreat 2012. Says Cox. “I can’t wait. It’s going to be great.” With the start of new chapters we are hopeful there will be more camps across the country.

Guide to starting a CCHA chapter

Speaking of chapters, we’re getting there! We’re just putting the finishing touches on a comprehensive guide that will help people across the country start regional chapters of the CCHA.

Development of the guide has taken a little longer than we expected – for two reasons. One is that we’re an all-volunteer organization… so we need to tend to our “day jobs” first. The second reason is that we want make sure we get the guide right and address all the key issues. We’re hoping to have it completed in January. At that point, we’ll be sending it out to those who have expressed interest in starting a chapter. Sorry for the wait!

CCHA at Sick Kids Family Education Day

The CCHA participated in the planning of the 2nd Annual Heart Disease in Children education day, held at the Labatt Family Heart Centre Family Conference in May.

In addition to working with the planning committee, the CCHA also hosted a booth at the event, participated in a panel discussion, and showed the CCHA awareness film “Born with a Broken Heart”.

Changing of the guard at the CCHA

There has been a changing of the guard at the CCHA. After four years as CCHA president, John MacEachern, a tetralogy of fallot patient who just turned 70(!), stepped down. Shelagh Ross, a co-founder of the CCHA and past vice-president, has been elected by the CCHA Board of Directors to fill the position.

The CCHA Board thanks John for his years of hard work and passion. During his tenure, the CCHA made significant inroads in raising the awareness of CHD in Canada. At the same time, the Board embraces the enthusiasm and experience Shelagh brings to her new position as president.

In related news, there are two new faces on the CCHA’s Board of Directors – Dr. Bill Williams, a retired cardiovascular surgeon from Sick Kids Hospital and David Edgehill, a perfusionist at Sick Kids Hospital (a perfusionist is the person who manages the heart lung machine). Bill and David are welcome additions to the Board and both bring a wealth knowledge and expertise. Bob Lowrie, a dad of a CHD patient, has unfortunately resigned from the Board due to other commitments but we thank him for his participation.

CCHA attends its 3rd Annual Cardiovascular Congress

CCHA co-founder Paula Andrade, and a handful of outstanding volunteers from British Columbia, manned a CCHA booth at the Canadian Cardiovascular Congress in Vancouver this past October.

2011 marked the fourth year CCHA has attended the annual conference – the largest gathering of cardiovascular and allied health professionals in Canada. Our attendance at the conference gives us an important opportunity to reach out to cardiologists, nurses, and industry leaders and tell them about the special challenges facing people with congenital heart defects.

As the population of CHD “survivors” grows, cardiologists are seeing more and more adult CHD patients. The vast majority of these cardiologists, however, lack the special training needed to treat the complex conditions may CHD patients have. One of our goals is to make sure these cardiologists are aware that there are now 15 centres across Canada with cardiologists specially trained to treat adult CHD patients.

Thank you to CCHA’s Paula Andrade and Doreen Fofonoff at the Pacific Adult Congenital Heart Centre in Vancouver, and all the volunteers who helped make this meeting a success. Thank you also to Heart & Stroke for their generous contribution which made it possible for us to attend the conference.

CCHA has a new bilingual brochure

An updated version of the CCHA brochure is now available at Sick Kids Hospital and several adult CHD clinics across the country. Thank you to Aileen Montesclaros at the McGill University Health Centre’s MAUDE unit for helping to translate the brochure and to Actelion Pharmaceuticals Canada Inc. for covering the printing costs.

If you’d like a copy of the new brochure, send us an email at communications@cchaforlife.org.

Last but definitely not least…

As always, we are looking for dedicated people to help us run this all-volunteer organization. We particularly need people with expertise in the areas of marketing, social media, fundraising, event planning, accounting, and legal matters.

That said, each and every one of you can help by:

• Contacting your local MPP to ask for help making February 14th Congenital Heart Defect Awareness Day
• Donating. Even though we are an all-volunteer organization, it still costs money to run the CCHA. You can help us continue our work to improve the lives of CHD patients by sending us a donation. You can donate online by clicking HERE or you can send us a cheque (made payable to the Canadian Congenital Heart Alliance) to: CCHA, C4-233 Cross Avenue, P.O. Box 233, Oakville ON L6J 2W9. All donations over $10 will be issued a tax receipt.
• Getting involved as a volunteer. If you’d like to help out, let us know. Just send an email at to communications@cchaforlife.org and let us know of any special interests or skills you might have. We’d love non-patients too because we could use their energy! So, if you’re a parent of a CHD child, or a spouse, sibling, or friend of someone with CHD, we want you.From all of us at CCHA, we want to wish you all a wonderful holiday and we hope for health and happiness for all of us in 2012 (and for every year after that too!).

CCHA
Canadian Congenital Heart Alliance | C4-233 Cross Avenue | P.O. Box 233 | Oakville | ON | L6J2W9 | Canada

www.cchaforlife.org

The host of this event was the newly re-branded Cardiac Health Foundation of Canada, a charitable organization dedicated to supporting cardiac rehabilitation and the advocacy of prevention and education across Canada.  Since 1965, $10 million has been raised nationally for facilities, scholarships and research, patient and public awareness, professional education, and medical equipment.  For more information, visit www.cardiachealth.ca.

Many of our members with congenital heart defects take advantage of the Cardiac Health Foundation of Canada rehab programs to help them exercise safely under supervision.  For this event we split the proceeds 50/50 with the Cardiac Health Foundation of Canada.

As you are aware, the Canadian Congenital Heart Alliance (CCHA) is a 100% volunteer-run organization made up of patients with a congenital heart defect, their families, friends and the medical community.  With your support, we aim to improve the quality of care for those patients, many of whom require lifelong expert care.  To learn more about the Canadian Congenital Heart Alliance (CCHA), please visit www.cchaforlife.org

The event took place at the Ontario Science Centre with the 3K walk and 5K walk/run taking place through the picturesque ET Seton Park.  The WALK of LIFE is UNIQUE.  It is NOT like every other walk or run that meets outside under tents… It doesn’t disrupt the fabric of a busy city… Rather, family, friends and local supporters gather inside a beautiful venue, are treated royally, and then proceed outside into breathtaking parkland.

This year’s event was hugely successful, with Team CCHA’s 18 participants raising over $5000 and the 5 members of The Slow Pokes team raising $1300, for a grand total of $6,464.  A big thank you to the members of Team CCHA: Toby, Shelagh, Lori, Debbie, Denise, Elizabeth, Mike, Cindy, Ben, Marietta, Tania, Emma, Mike, Cathy, Luigi, John, Aki, and team captain Jennifer.  Thanks as well to The Slow Pokes team of Chris, Reagan, Lauren and team captain Dee.  Great job everyone and we hope to see more of you at next year’s event! It’s a great way to raise funds, get exercise, AND meet fellow heart friends.

An Inner Grace is available as a Kindle book from amazon.com. It covers the life of Dr. Maude Abbott, as told by her niece Margaret Abbott.

The Heart Specialist, by Claire Holden Rothman, is a fictionalized story inspired by the life of Dr. Maude Abbott. It is available both as a book and electronically.

(An excerpt from Dr. Gary Webb’s article The Long Road to Better ACHD Care, published in the journal Congenital Heart Disease, 2010.)

“Successful political action will be critically important to the improvement of adult congenital heart disease (ACHD) services in the future. In so saying, I use the term “political” to imply not only governmental representation, but representation at all levels—community, professional, institutional, organizational, financial, and governmental.

When I was working in Toronto, I made the mistake of believing that I and my colleagues should be the advocates for ACHD patients at the divisional, hospital, university, and government levels. I spent a lot of time doing this over 15 years, and had very little to show for it. I was mistaken to have done it that way. We used to bring patients along in support of our professional advocacy. I realize now that I had it backwards.

The primary players in ACHD political action must be patients and families. The patients and families must create their own organizations that are strong, coherent, and persistent enough and intelligent enough to represent their own interests to the people who make decisions that impact their lives and their care. They are the only ones with potential political clout, and the only ones whose interests will be seen as legitimate. Those of us working in the ACHD field as healthcare professionals can clearly provide important support and encouragement to the patients and families, but we cannot and should not take the lead, except in our own institutions.

Of course, there are people and groups outside the ACHD community whose cooperation and support would be extremely important in advancing the interests of ACHD patients and their families.

First among these are pediatric cardiologists, the people who helped save their lives and who sustained these patients for the next 15 or 20 years; the people who were important, trusted, and often beloved by these families and patients. If pediatric cardiologists were to more consistently help patients transfer to competent lifelong ACHD care, this would be a huge step to help ensure that their patients will continue to receive high-quality care for the rest of their lives. By helping their patients find the adult care they need, wherever it may be, pediatric cardiologists can become the lifelong partners of their patients and their families.

The second group from whom support is needed are the children’s hospitals, where care was provided for so many years. In my opinion, children’s hospitals should have done and should still be doing what they can to ensure that their graduates with chronic health conditions are directed to programs that can provide continued excellence in care as adults. To the present, I believe that children’s hospitals have largely dropped the ball in meeting this responsibility. Children’s hospitals have not done enough to ensure that their graduates receive equivalent care beyond the pediatric age range. As a consequence, many patients are left to try to find their own way in an adult medical environment that is often not welcoming as well as one without the trained staff they need. Children’s hospitals can do better, and should be pressured by patients and families to do better.

Then there are the national societies and professional organizations that can assist, obstruct, or ignore ACHD patients such as The American Heart Association in the United States, the Provincial Heart Foundations and the Canadian Heart Foundation in Canada, the American College of Cardiology, the American Board of Pediatrics in the United States, and the Canadian Cardiovascular Society in Canada. These and other organizations could be helpful in advancing the interests of ACHD patients. These organizations should be the targets of political action in the first instance, and hopefully will become important participants and collaborators thereafter.”

-Gary Webb, MD

Past Director of the Toronto Congenital Cardiac Centre for Adults and presently with the University of Pennsylvania School of Medicine, Philadelphia.

To read the entire article please click HERE.