#CHDAwarenessWeek may be over but we continue to work year-round to improve #CHD resources, support, and research.
Special appreciation goes to Karen Vecchio, Member of Parliament (Elgin-London-Middlesex) for her statement in the House of Commons recognizing Congenital Heart Disease Awareness Week (Feb 7-14) and supporting Canadian families living with Congenital Heart Disease.
Karen Vecchio, MP is Deputy House Leader of the Official Opposition.
Excited to see Alberta is leading the charge this year, proclaiming CHD Awareness Week in Edmonton, Calgary and Chestermere.
Thanks to our board member Jennifer M for submitting the requests. If you want to help us have even more cities across Canada proclaim CHD Awareness Week 2022, email us at email@example.com to get involved!
Les villes canadiennes proclament la Semaine de sensibilisation aux cardiopathies congénitales
Je suis ravi de voir que l'Alberta mène la charge cette année, proclamant...
In October 2020 CCHA in partnership with MacEwan Nurs 424 students conducted a Mental Health survey for Canadians living with CHD. The survey results indicated that an astonishing 88% of adults living with CHD said they had experienced mental health challenges at some point.
Welcome to your one stop shop for all things Fontan related, whether you are a health care provider or patient.
Follow the link to find out everything you need to know about Fontan physiology, how far we have come and what we hope for the future. #CanadianFontan
The Canadian Fontan website and registry is for adults and parents of Fontan children as well as CHD medical professionals. The site includes patient stories, educational resources, registry and notification of research projects. Check it out!
Although 2020 was a tough year for us all, we at CCHA are looking back fondly on some of the incredible work we were able to do to enrich the lives of our CHD community members. Thank you to all our donors, members and volunteers who made it all possible!
See why our Board Members support CCHA and its mission.
I was born with a congenital heart defect called ALCAPA. Although I’ve lived with this my whole life, it was only discovered when I was 26 years old. The fact that I lived well into adulthood without a serious outcome was surprising and I feel blessed to have made it through. Since my diagnosis, I’ve been seeing the team at the Toronto General Hospital Peter Munk Cardiac Centre. I had open heart surgery to repair my anomalous coronary artery on November 24, 2014 and due to complications, required a second surgery...
Have you started your Holiday shopping yet? It is about to be that wonderful time of the year! But this year you can not only find that special item but you can support the Canadian Congenital Heart* Alliance too!
We had great success with the 1st 'Virtual Holiday Market'for CCHA that we are holding part 2. Beginning November 30 until December 9, 2020 and will feature nine wonderful vendors. Each will showcase their products and share gift ideas, sales and more over the next week. The BEST (besides getting your holiday shopping done) is that a percentage of all sales during this week will be...
CCHA was LIVE with a virtual concert to raise CHD AWARENESS
One of CCHA's goals as an organization is RAISE AWARENESS of CHD! As a way to achieve our goal, on November 22nd at 5:30pm EST/6:30pm AST, we teamed up with a group of students from Saint Francis Xavier University to host a FACEBOOK LIVE Concert – Music With Hearts; 1 in 100 Journey!!
This event featured some great East Coast talent such as Russ Matthews, Tyler Mullendore, Todd Googoo, and many more! We also have some wonderful talent from individuals who live with CHD such as Shannon Durnan and Joe Bladek!! Also Kyle Tayes and...
Canadian Congenital Heart Alliance in partnership with MacEwan University are asking how your experience living with CHD has impacted your mental health. Your answers will be anonymous and the data collected through this survey will be used to guide program and resource development, future research, and advocacy tools. Survey closes November 16, 2020.
The Canadian Congenital Heart Alliance (CCHA) is happy to be part of this year's VIRTUAL WALK OF LIFE! Even though we can’t celebrate in person this year, we are provided with a unique opportunity to come together from all across Canada to raise funds to support those living with CHD. By joining Team CCHA, you will be helping to fund important programs and events such as:
Support initiatives such as Transition Programs, and more!
The World Health Organization officially declared COVID-19 a global pandemic on March 11, 2020 with Canada and provinces putting lockdowns in place shortly thereafter. There has been a lot of chaos, confusion and misinformation over the 9+ weeks.
As provinces begin to ease restrictions for the COVID-19 pandemic, it's important to be aware that children and adults living with congenital heart disease (CHD) may be at higher risk for more severe symptoms and complications.
Canadian Congenital Heart Alliance has created a COVID-19 and CHD tips page. For important informations, Q&A, resources...
We are excited to announce the launch of our revised and expanded Transition information section on our website, which includes an outline of transition timeline recommendations and a tools and resources section to support and educate youth and families during the transition process. Check it out!
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...
Giving Tuesday gives us the opportunity to raise CHD awareness. This year, we are reflecting back on some of our accomplishments, showing how your generous donations and support made all this possible.
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.
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 Heart Month 2019, we highlighted CHD stories of our members from across Canada. Thank to everyone for their stories of strength, perseverance and hope and for sharing their experience with the community of CCHA and anyone who has been touched by Congenital Heart Disease.
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...
Jennifer Graham - Vice President, Interim President
Jennifer Graham was born with a CHD - congenitally corrected transposition of the great arteries (ccTGA). Jennifer has been a part of CCHA since 2006. She graduated from Carleton University with a B.Sc Hon in Biology and Psychology. During her career she has held various positions including Project Manager, Computer System designer and developer, Process Re-engineering Analyst and National Trainer in the Insurance and Pharmaceutical industries.
While part of the CCHA team, she has helped organize events fundraising and social events as well...
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.