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Canadian Congenital Heart Alliance

#CHDAwareness

Beat Retreat returns to CCHA

Exciting announcement from CCHA and Beat Retreat

The Canadian Congenital Heart Alliance (CCHA) and The Beat Retreat Congenital Heart Camp are proud to announce that they have once again joined forces to support and deliver “The Beat Retreat” camp.

This fun-filled four day event for adults living with congenital heart disease (CHD) will return as a program under the Canadian Congenital Heart Alliance known as the “The Beat Retreat”.

With the Beat Retreat returning as a program of CCHA, it will ensure continued financial support for the camp, allowing for stable and long term growth.  “We are...

Walk of Life 2020

 

Join Team CCHA in the 2020 Virtual Walk of Life! https://bit.ly/WOL2020TeamCCHA

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:

  • Awareness materials
  • Camps
  • Conferences
  • Education days 
  • Support initiatives such as Transition Programs, and more!

You will also be supporting...

Join the movement - CHD Awareness
 
Be part of a growing movement to increase #CHD Awareness. Join CCHA in the fight!
 
Advocate   CCHA on Facebook  CCHA on Twitter  CCHA on Instagram   @cchaforlife
 
Volunteer   Volunteer with CCHA
 
Donate       Donate to CCHA
 
 
Transitioning from pediatric to adult CHD care

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!

General information about Transition and Risks: https://www.cchaforlife.org/transition 

Transition timeline recommendations: https://www.cchaforlife.org/transition-timeline-recommendations

Tools and Resources: https://www.cchaforlife.org/transition-tools-resources

 
In other news, CCHA collaborated...
CCHA: A Case to Support the Heart

Help CCHA deliver hope this season

Donate Now Through CanadaHelps.org!PayPal donation

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...

Stay home save lives COVID19

Image_by Grégory ROOSE from Pixabay(4983843_1280)

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.  For 7 weeks now Canadians having been living through this COVID-19 pandemic.  We are all living with heightened emotions, living life day to day, not knowing what tomorrow or next week is going to look like, unable to make plans for the future.  We are all dealing with emotions such as fear and anxiety due to uncertainty and stress about jobs, school, financial wellbeing, health...

CHD Awareness Week in media

 

Jennifer Michaud - CCHA Board member shares her CHD story on the Marilyn Denis show.

https://www.marilyn.ca/Health/Articles/February2020/Filling-the-research-gap.

You can see her Heart and Stroke interview here

https://youtu.be/5CBy3zmjNAM

 

CTV2 London – Hearts of London/Middlesex chapter of CCHA with Chair Lisa Wright and Owen Gillet – Feb 11, 2020

Owen Gillet shares his CHD story of living with HLHS, diagnosed with a life-threatening congenital heart defect weeks before he was born, and he hopes his story of survival will help others.

The purpose of these transition recommendations is to support families understand the stages of Transition and support discussions with your CHD healthcare team.  Transition should be personalized for each individual, in accordance with their chronological age, developmental stage and abilities.  Active engagement in the transition process is vital for teens and young adults and families to prepare for a healthy life as an adult with CHD

Life Stages

Introduction to Health: Age 2-7 years old

Goal - Understanding their body

Transition preparation begins when your child is a toddler; coach them to...

Resources

Health Information Summary

It’s important that your teen carry a Health Summary record in some form at all times. It should include

  • name of cardiac condition and other medical conditions
  • previous cardiac surgeries/interventions and other surgeries
  • name of medications
  • allergies
  • need for endocarditis prophylaxis (Yes/No)
  • names and contact details of health providers (CHD and primary care)
  • other vital info (i.e. low HR, low O2 sat, no pulse in right arm)

What is normal for you and your CHD?

There are many options to achieve this.

Medical Alert bracelet - consider getting a Medic-Alert bracelet as they have 24 hour medical...

Take our survey

We want to hear from you!

We are looking for feedback from teens, young adults and adults and their families about their experiences - past or current in transitioning from pediatric to adult CHD care. 

Below is a link to a brief survey (5 min) to tell us about your experiences.  We wil use your feedback to create educational materials and resources.  We look forward to hearing from you!

Create your own user feedback survey

https://www.surveymonkey.com/r/5QQHRHY

 

 

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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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