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Canadian Congenital Heart Alliance

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Read our latest news and announcements.

REGISTER here for an upcoming Fearless Physical Activity Events

 

Below is the list of upcoming Fearless Physical Activity events and locations

REGISTER now for an upcoming Fearless Physical Activity Events

For more information and details about the Fearless Physical Activity program, visit Fearless Physical Activity

 

Donate Here

Have you heard of The Great Canadian Giving Challenge?

Happening all June, every dollar you donate to our charity qualifies us to win $10,000.

The more you give, the more chances for us to win!

Check out this YouTube video to learn more https://youtu.be/SLWjwHwsVWQ

 

Get all the details at www.givingchallenge.ca #GivingChallengeCA

Donate Now to help us support the 257,000 children and adults living with #CHD

 

Province the first in Canada to offer screening to all healthy babies  By Jennifer Chevalier, CBC News. Photo Jean Delisle/CBC

 

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...

Jimmy Kimmel

Much love to Jimmy Kimmel as he shares the emotional and heartfelt story of his family's CHD journey with their newborn son 'Billy'', born with Tetralogy of Fallot and Pulmonary Atresia.

A story that many people living with CHD, their parents and families and friends can relate to and understand.

https://youtu.be/MmWWoMcGmo0

A huge thank you to Jimmy Kimmel for the very powerful CHD Awareness and Advocacy story!

 

For more videos and information visit http://www.cchaforlife.org/jimmy-kimmel-live

Very exciting, CCHA's Fearless Physical Activity program in partnership with CHEO is featured on CTV Ottawa!

Check out the video: http://ottawa.ctvnews.ca/video?binId=1.1166252 

CHEO has a Cardiology Approved Camp at the YMCA August 14th to 18th. Deadline registeration is April 30th

Contact Angekica Blais for more information e-mail: ablais@cheo.on.ca

Phone: 613-737-7600 ext: 4191

Download Camp poster 2017.pdf (24.46 MB)

CHEO has a Cardiology Approved Camp at the YMCA August 14th to 18th. Deadline registeration is April 30th Download Camp poster 2017.pdf (24.46 MB)

AGM 2016 Summary:

Download AGM 2016.pptx (8.13 MB)

 

 

Krista Vriend - President

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...

Date: November 29, 2016 - 7:30-9:00 PM EST

1) IN PERSON:

 

For those able to be in Toronto, by attending in person.  Our AGM will be held in the SickKids Peter Gilgan Centre for Research and Learning (PGCRL) at 686 Bay St. Toronto in the Multimedia Room, located on third floor.  (Take the elevators behind security to the 3rd floor and the Multimedia Room is straight ahead).

 

            2) VIDEOCONFERENCE:

 

For those unable to be in Toronto, preferably attend via videoconference.  This will allow those in the meeting to see/hear those calling in via the callers computer mounted cameras/speakers/microphones (and...

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...

Fearless Physical Activity - Getting and Keeping Ontarians with Congenital Heart Disease Active in Community Sport, Recreation and Physical Activity

View the attachment for more information Download Graduate Student Internship Available - MSc or PhD position Fearless.pdf (194.64 KB)

CCHA_Logo2registered

Board of Directors positions available!

View the attachment for more information

Download Board of Directors Positions Available.pdf (444.23 KB)

 

'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...

Check out the Target Practice Book website of Chris Dyson who is a goaltending instructor, author and friend of the CCHA. It makes a great stocking stuffer for the holidays!

Be a great Canadian and help support the CCHA, by participating in The Great Canadian Giving Challenge

Follow the link to donate 

https://www.canadahelps.org/gcgc/97015

Dear Patients and Families,
 
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:
 
 
And all of all the tweets + photos from the day can be found 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.  

The 2016 Beat Retreat camp information is now available! To find out more about the camp and to print the application and medical forms please click HERE.

Adults with congenital heart disease (ACHD) may be at increased risk for post-traumatic stress disorder (PTSD), new research suggests...

To read the article please click HERE

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.

To read the announcement please click HERE.

 

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.

Their results include:

  • 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.

While at camp, attendees...

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.

Middle-aged congenital heart disease survivors may need special care 

American Heart Association Scientific Statement 

 

Statement Highlight

  • For the first time, the American Heart Association has made recommendations for treating people older than 40 with congenital heart disease.

Embargoed until 3 p.m. CT/4 p.m. ET Monday, April 20, 2015 

DALLAS, April 20, 2015 — For the first time, the American Heart Association has issued recommendations for healthcare providers treating people older than 40 with congenital heart disease.

“People born with congenital heart disease are living longer and fuller...

A Prescription for Change – Making Affordable Medicine a Priority

by Alison Lawton

When we launched the Access Our Medicine Initiative on World Health Day last year I didn’t know if anyone would respond.

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...

The British Heart Foundation has released figures that reveal a huge 83% drop in the number of children dying from congenital heart disease. News story from Australia’s The Reporter:

FIXING a child’s heart is one the most intricate operations that the NHS performs.

Surgeons who do it must operate on tiny babies whose hearts are hardly bigger than walnuts and whose veins are little more than a hair’s breadth across.

But despite the intricacy, it is something that surgeons, and in particular NHS surgeons, have quietly been getting better at for decades.

Today the British Heart Foundation has...

March 7, 2013

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 [1]. 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...

HIS IS A MOMENTOUS ANNOUNCEMENT:

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 announcement is available at http://www.cardiosource.org/News-Media/Publications/Cardiology-Magazine/...

This new ACHD subspecialty acknowledges efforts from multi-society stakeholders including...

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 [1]. 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...

Are you an adult with congenital heart diseases? To find a cardiologist with specialized training in adult congenital heart disease, please read for important info.

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