Canadian Congenital Heart Alliance

#1in100

By Sarah Trainor, CBC

"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.

A great piece for generating awareness during...

Congratulations to Nova Scotia for being the first province to declare February 7 - 14th Congenital Heart Disease Awareness Week! Way to go!

Big thanks @Brave_HeartSS @yarrowgillis @BrigadonTweets @IWKHealthCentre and everyone involved to raise awareness for CHD and make this happen.

 

 

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.

 

https://www.facebook.com/MPMarilynGladu/videos/920094518165380/

#1in100

Hey 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...

Transitioning from pediatric to adult CHD care

Transition

Children pass many  milestones growing up, the first day of kindergarten, the liberty of becoming a licensed driver and -going-off-to-college or university, just to name a few. Parents give the necessary “talks” about responsibility, risk and behaviour. These transitions are thought of as rites of passage.

Prepping our youth for entry into adult health care should be no different than transitioning into college, university or into the workforce.  At some point, most individuals will assume responsibility for maintaining and managing their own health. There remains work to do to...

Read our stories of strength, perseverance and hope living with CHD

Nathalie Lacoste-Hofmann's story (CHD and heart transplant story) (CCHA board member) (article written by Robin Roberts for CHD Awareness Week) https://www.healthing.ca/diseases-and-conditions/heart-health/what-it-fe...

Lisa Wright and her daughter Rachael's story (Pulmonary Stenosis) (Lisa leads our Hearts of London/Middlesex chapter) (article written by Robin Roberts for CHD Awareness Week) https://www.healthing.ca/diseases-and-conditions/heart-health/how-i-care...

Jennifer Mulder's story (Tetralogy of Fallot (ToF) with...

 

What is the Beat Retreat?

The Beat Retreat is a fun-filled, four-day weekend for adults with congenital heart disease. You’ll have an opportunity to participate in a mix of traditional camp activities – all geared to your physical ability and comfort level. Equally important, you’ll have an opportunity to make new friends and learn from the experiences of others living with CHD. You’ll also have an opportunity to chat with healthcare professionals in a relaxed and informal setting. In short, it’s a weekend of fun, friends, firsts, and great food.    

A picture is worth a 1,000 words.

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Check out how congenital heart disease stacks up against better recognized diseases in Canada! So many affected and so little awareness and funding! Get involved with CCHA, donate, and spread the word about the growing population of of "survivors" so that we can get the care and support we need to live long, healthy lives!

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