Canadian Congenital Heart Alliance

#CHD

Aiden and PM Trudeau

image source: Make A Wish Eastern Ontario

Aiden's Prime Minister of Canada for a Day Wish Granted

Aiden Anderson, a 15 year old from London, ON finally had his Make A Wish granted this week.  Aiden has had a passion for politics since he was in Grade 7 when he first made his wish.  Aiden and his family are members of CCHA and part of our Hearts of London/Middlesex chapter in London ON.

This week Aiden's wish came true with an incredible once in a lifetime experience thanks to Make A Wish Eastern Ontario and Make a Wish Southern Ontario. His 4 day journey included

  • An official Prime Minister's...

Those living with Congenital Heart Disease may be concerned developing Endocarditis or if they have been told they no longer require antibiotic prophylaxis.

Below is an excerpt from the Canadian Paediatric Society Position Statement explaining the reasons for the 2007 change to the Guidelines (reaffirmed Feb 28, 2018):

 

Prevention of infective endocarditis: Updated guidelines

Primary reasons for Revision of the AHA guidelines

The new guidelines were not based on the results of a single study but rather on the collective body of evidence published in numerous studies over the past two decades...

Organ donations help save lives.
 
“Every week 5 Canadians die while waiting for a transplant. Yet, a single donor can save up to 8 lives through their organs, and save or heal more than 100 lives through tissue donation.”
 
Click the link below for more details on how you can help change organ registration system and help save lives.
 
To register for organ donation or for more information, visit https://www.canada.ca/en/public-health/services/healthy-living/blood-organ-tissue-donation.html#a2 and select your...

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.

 

 

Health records

Toronto Star reporter Kristin Rushowy shining the spotlight on issue of medical records retention, a growing problem for Canadians living with CHD who had surgery as a child.

https://www.thestar.com/news/queenspark/2017/07/28/medical-records-of-sick-kids-should-be-kept-for-life-group-urges.html

 

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.

Interested in Fearless Physical Activity? Check out our resources here Fearless Physical Activity

 

Funding provided through a grant from the Ontario Ministry of Tourism, Culture and Sport

 

 

Join Team CCHA on Saturday May 27th to walk or run while raising money for the Canadian Congenital Heart Alliance (CCHA).

Come out for fun, exercise, meet other CHD patients and their families and support a worthy cause all the same time!

Online registration is now open! Join Team CCHA today.

Date: Saturday May 27th

Where: Ontario Science Centre, 770 Don Mills Road & E.T. Seton Park (Sunnybrook Parkland) located in Toronto, Ontario map

Time: 8am - 12 noon

The event features programs for people of ALL ages.  Participants have a choice of:

  • Walk: 3km or 5km;
  • Run: 5km or 10km competitive...
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...

 

From 2016 to 2018 the Canadian Congenital Heart Alliance (CCHA) partnered with 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) across Ontario through funding from the Province of Ontario. Each season, Fearless Physical Activity events were held in London, Ottawa, Thunder Bay or Sudbury and Toronto for all ages and all levels of ability and experience! These events were very successful in creating new connections amongst families living with...

'Fearless' Physical Activity

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...

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Congenital Heart Surgeons' Society Data Center
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.

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