The Canadian Congenital Heart Alliance (CCHA) is the only national organization that supports and advocates for the over 257,000 children and adults in Canadian living with Congenital Heart Disease (CHD).
CHD is the most common birth defect, affecting 1 in 100 babies born worldwide. CHD is a general term for a range of birth defects that affect the normal way the heart works, and are present at birth. It requires lifelong, specialized care including many auxiliary needs and challenges such as; insurance, mental health, disability, financial planning...
Today we celebrate 75 years since the first "blue baby" surgery by Alfred Blalock, with Helen Taussig and Vivien Thomas on November 29, 1944.
The child was 15-month-old, Eileen Saxon, the surgery was a success and she went home after 3 months. Unfortunately her cynotic episodes returned and 2 days before her 2nd birthday, she underwent another operation, she passed away 5 days later.
Now known as the BT or BTT shunt, the surgery was a success and really the start of #CHD surgery. We have come a long way since then, with an almost 95% survival rate into adulthood now.
Giving Tuesday is a global movement dedicated to giving back. After the excitement of Black Friday and Cyber Monday, comes Giving Tuesday. Charities, Communities, Businesses and Individuals just like you have the opportunity to give back and make a big impact.
The season of giving is upon us, and what better way to spread some holiday cheer than to raise awareness for CHD (Congenital Heart Disease), the number one birth defect affecting Canadians of all ages.
Thank you to Marilyn Gladu, MP for supporting Congenital Heart Disease (CHD) awareness in Canada and Canadian Congenital Heart Alliance.
By reading your statement in the House of Commons today and recognizing February 14th as Congenital Heart Disease (CHD) Awareness Day in Canada, you help increase awareness and advocacy for the more than 250,000 Canadians living with Congenital Heart Disease, many who require lifelong specialized care.
Marilyn Gladu is the MP for Sarnia-Lambton and serves as the Shadow Minister for Health in the Official Opposition
During 2019 Heart Awareness Month, we will be highlighting CHD stories of our members.
Our next Faces of CHD story is about Rita. You can read Rita's story below. For previous stories, see bottom of page.
Rita from Lethbridge, AB
CHD diagnosis: Tetralogy of Fallot
I was born January 1970 in Lethbridge, AB. Within one week I was diagnosed with a heart murmur, and by one month of age, referred to Dr. R. Sommerville in Calgary, AB. I was diagnosed with Tetralogy of Fallot. At around four months of age, I had my first surgery, by in Vancouver BC. In 1978, I went back to Vancouver for...
Study testing high-dose influenza vaccine in high-risk ACHD patients.
A North American INVESTED study will test the hypothesis that high dose trivalent influenza vaccine will reduce cardiopulmonary events to a greater extent than standard dose quadrivalent influenza vaccine in high-risk cardiovascular patients with a recent history of myocardial infarction or heart failure. An ACHD sub-study will investigate the effects on ACHD population.
Already received the influenza vaccine this year, you are not eligible to participate this year. However, you can still contact the...
Here is a sneak peek at the upcoming collaborative article on medical treatment and care of adults with Congenital Heart Disease in Canada. Thrilled to be part of this great collaborative research team lead by Dr. Jennifer Lapum at Ryerson University; and included Dr. Suzanne Fredericks also at Ryerson University, Barbara Bailey and Dr. Terrence Yau at Peter Munk Cardiac Centre, Dr. Ariane Marelli at McGill University Health Centre and our own Jennifer Graham at Canadian Congenital Heart Alliance.
We are honoured to be named feature charity of the month by First Edition First Aid Training!
Thank you for recognizing our organization and the hard work we do to support children and adults in Canada living with congenital heart disease #CHD through education, research and advocacy. Your recognition helps to shine a spotlight on Congenital Heart Disease and increase CHD awareness.
Toronto (September 20, 2018) – In a remarkable new genetic discovery, researchers at the Peter Munk Cardiac Centre, University Health Network (UHN), Ted Rogers Centre for Heart Research and The Hospital for Sick Children (SickKids) have found strong evidence that rare DNA variations can lead to Tetralogy of Fallot (ToF).
Have you heard of the Great Canadian Giving Challenge? It is a national public contest to benefit any registered Canadian charity. Every $1 donated to a registered charity in June, automatically enters the charity to win an additional $10,000 donation. The grand prize draw is on Canada Day and one lucky charity will receive the grand prize of $10,000.
Did the Great Canadian Giving Challenge make a difference last year? In 2017, the third annual Great Canadian Giving Challenge, 77,785 Canadians participated, donating almost $10 million to over 10,000 charities, representing an...
Do you know what the # 1 birth defect is in Canada? Congenital heart disease (CHD).
On Tuesday, February 27 on ‘The Agenda’ - TV Ontario, there was a panel discussion focusing on congenital heart disease. Viewers heard more about the #1 birth defect - which affects about 1/100 births. Guests included
Dr. Erwin N. Oechslin, director at the Congenital Cardiac Centre for Adults located at the Peter Munk Cardiac Centre, University Health Network...
"Thrown into the strange, scary world of critically sick children, heart parents become fierce advocates for awareness." Thanks to Sarah Trainor of CBC for sharing her family's story of their son Ellis' journey with CHD. Ellis' story touches on so many issues that CHD patients and their families face, including the importance of maternal screening for heart defects, the challenges of relocating to seek life-saving medical treatment, and the incredible roles that parents play as caregivers and advocates for their children.
Thank you to Marilyn Gladu, MP (Sarnia_Lambton, ON Opposition Health Critic) for reading our statement in the House of Commons and recognizing February 14th as Congenital Heart Disease (CHD) Awareness Day in Canada.
CCHA is challenging you to find your 1 in 100 Champion!
Share your video, picture or story of your 1 in 100 Champion on social media to help raise awareness for Congenital Heart Disease #CHD. Tag us in your post @cchaforlife on Facebook, Twitter or Instagram using the hashtags #1in100, #CHD, #CCHA. Not on social media - no problem. You can still share your 1 in 100 Champion video, picture or story by emailing them to us at...
Interested in supporting children and adults with CHD across Canada, apply for a position on our Board of Directors
The Canadian Congenital Heart Alliance (CCHA) is looking for its next generation of leaders to fill critical volunteer positions on our national Board of Directors. This elected group supports the work of CCHA and provides mission-based leadership and strategic governance. We believe that a highly effective Board includes members from across Canada from many walks of life and that this diversity helps to best guide the overall strategic management and stewardship of the...
The Canadian Congenital Heart Alliance (CCHA) partnered with the CHEO's HALO Research Institute and recreational facilities in your local community to deliver Fearless Physical Activity events for children, teens, and adults living with congenital heart disease (CHD) held across Ontario in 2017.
The announcement that Pulse Oximetry Newborn Screening is coming to Ontario is amazing news for early detection of babies born with Critical Congenital Heart Defects (CCHD).
This program will help catch upwards of 150 babies a year born with Congenital Heart Disease (CHD) but who currently leave the hospital undiagnosed. “Early detection and treatment of CHD is critical in ensuring the best possible long-term quality of life for individuals that will live with this life-long disease" stated Krista Vriend, President of the Canadian Congenital Heart Alliance (CCHA). "Leadership and progress on...
Krista is a CHD patient, with over 15 years of marketing experience in the financial industry. She is currently the Director of Global Marketing for Insurance at Scotiabank. She has also run her own event management company, and has served on the Board of Directors, Chaired the Special Events Fundraising Committee, and been a Ski School Director, for the Ontario Track 3 Ski Association. She lives in Toronto and is married with children.
Jennifer Graham - Vice President
Jennifer Graham is a CHD patient with congenitally corrected transposition of the great arteries...
Survey Invitation for New CHD “Fearless Physical Activity” Events
CCHA wants to hear your ideas for our “Fearless Physical Activity” events!
CCHA needs your help to design physical activity events specifically geared towards children, youth and adults with CHD.
In order for CCHA to make these “Fearless” events as helpful and successful as possible, you are invited to complete a very brief survey asking for your opinion on the design of these events. What activities would interest you?When and for how long would you want to participate?
The survey will take only 5 minutes. Click on the link...
The Canadian Congenital Heart Alliance (CCHA) is thrilled to announce they are the successful recipients of a grant from the Ontario Ministry of Tourism, Culture and Sport. This grant will fund a comprehensive, ground-breaking two-year study – ‘Fearless Physical Activity’ - to support the delivery of high-quality, meaningful physical activities for children, youth and adults with congenital heart disease (CHD) and their families.
Thanks to an Ontario Sport and Recreation Communities Fund grant of $186,934, this unique project, in collaboration with Dr. Pat Longmuir of the Healthy Active...
Thank you for spending the day with us for our inaugural ‘Unique Hearts, Unique Lives’ patient education day on May 7. We very much enjoyed meeting many of you and we hope that this is just the first of many future events to come.
Many of you requested the presentations from the event and we are happy to announce that the power point presentations can now be found on the Providence Slideshare site at:
CCHA president, Eric Gonneau, and long time member Lori Constable-Smolcic jointly gave a lecture to University of Toronto Nursing Students on April 13th, 2016. The presentation, titled “When Cute Kids Grow Up” explained in detail from a patients perspective life with Congenital Heart Defect, especially as an adult. Students were also introduced to CCHA and explored the implications on the health care system of adding more CHD Adult patients every year. Numerous questions filled all the available time.
Congratulations to Dr. Gary Webb for being awarded a Lifetime Achievement Award from the International Society for Congenital Heart Disease!
Beginning in 1980, Dr. Webb was codirector, and then director of the Toronto Congenital Cardiac Center for Adults, the first such ACHD clinic in the world. He was the founding president of the Canadian Adult Congenital Heart Network, and he was the founding president of the International Society for Adult Congenital Heart Disease.
Adults with congenital heart defects at considerably higher risk of stroke
Wednesday, 25 Nov 2015 12:31
A study published in Circulation has shown adults with congenital heart defects to have much higher rates of stroke, compared to the general population.
The researchers from McGill University, Montreal, Quebec, Canada analysed stroke data on 19,638 congenital heart disease patients between the ages of 18 and 64, and compared them with that of the general population of Quebec, Canada. Their aim was to find the frequency, risk and strongest predictors of stroke.
7th annual Beat Retreat brings adult CHD patients and professionals together
What has 36 hearts, 72 legs, and more enthusiasm than you can shake a stick at? Give up? The Canadian Congenital Heart Alliance’s 7th annual Beat Retreat, held September 17-20, 2015.
The Beat Retreat is a fun-filled, four-day annual event for adults with congenital heart disease (ACHD). This year’s retreat – the biggest to date – drew together 27 adult congenital heart disease (CHD) patients, two caregivers, and seven health care professionals from Southern Ontario, Quebec and even Alberta.
Would you like to create a wallet-size health passport in case of emergency? You can now use the SickKids MyHealth Passport to create a CHD-specific form with all of your pertinent health and contact information. Just click HERE and use the drop-dow menu to select "Congenital heart disease" and then fill out the information and keep it in your wallet or purse.
We knew that the price of medicine was rising for life-changing medicines with devastating consequences for everyone, around the globe. We learned of people choosing between food and medicine, being pushed into poverty and even dying because they couldn’t afford medicine they needed.
But I also knew that for many people the issue of access to affordable medicine just isn’t top of mind until...
Boston, MA - The annual number of hospitalizations for congenital heart disease among US adults increased more rapidly than hospitalizations among children over a recent 12-year period, new research shows . Between 1998 and 2010, the frequency of hospitalizations among adults admitted for congenital defects has grown twice as fast as that for children, according to the new report.
As a result, annual adult admissions are approaching those of children, with adults now accounting for 36.5% of all congenital heart defect admissions. “The observed trend is likely due to a number...
The American Board of Medical Specialties (ABS) announced the creation of physician certification in ACHD on December 5, 2012. The announcement of an ACHD subspecialty certification in the US nails ACHD down as an equal partner among other subspecialties. This decision is a landmark and a milestone in the young history of ACHD and transitions ACHD into a new era!
This article was posted on the theheart.org website on December 4, 2012.
Cincinnati, OH – Children and adolescents with pacemakers and implantable cardiac defibrillators (ICDs)—and their parents—suffer from a poorer quality of life than both healthy children and patients with mild forms of congenital heart disease, a new study reveals . Whether lives could be improved with the use of psychotherapy needs to be assessed in this population, say Dr Richard J Czosek (Cincinnati Children’s Hospital Medical Center, OH) and colleagues in their paper published online December 4, 2012 in...
The Congenital Heart Surgeons' Society Data Center takes pride in their research and it would not be possible without the annual participation of the patients and families enrolled in their studies. Please click on the banner to be part of their team and to join their community.