The Healthcare We Take for Granted + Our 1st Digital Birthday! | CCHF April Newsletter

Monday, April 27, 2020

Sometimes we take our health for granted.

As Canadians, we’re lucky to experience the benefits that come from our healthcare system and years of scientific research. The findings of healthcare service workers and their tireless efforts have given us the quality of life we enjoy today. Given the current global climate, we have many reasons to feel grateful.

In April, we celebrate two globally significant health days – DNA Day and World Health Day. Both occasions recognize the phenomenal achievements made in the scientific field, but also reminds us of the role that healthcare workers play in supporting and acting on ground-breaking research. Especially in these recent times while we’re experiencing the impact of COVID-19 in all areas of the country, their work has never been more top of mind.

CHEO is a prime example of a children’s hospital that is leading the way in gene research globally.

CHEO is home to Care4Rare, a world-renowned research consortium focused on identifying the genetic causes of rare diseases. Using state-of-the-art genomic technologies, they have studied more than 1,000 rare diseases among 5,000 families worldwide and identified the genetic cause for 50% of the diseases they studied. Thousands of families have received a genetic diagnosis through Care4Rare, providing many essential insights and the best possible care.

All of our Canadian children’s hospitals are working to further this research and provide the public with a greater understanding of genetic disorders that may directly impact their families or people they know.

In honor of World Health Day’s 2020 theme, reach out to a health professional and be sure to thank them for their work. At CCHF, we work to ensure workers like nurses are equipped to help kids when they need it the most. Read more about World Health Day below.

FOUNDATION FOCUS: CHEO Foundation

According to CHEO, there are more than 7,000 rare genetic diseases.

Although the term “rare disease” may make it seem that only a select few suffer from such uncommon conditions, CHEO’s Care4RareProject recognizes that this is not the case. These conditions affect some one million Canadians and their families, three-quarters cause significant disability and more than half affect children – causing more than one-third of deaths in childhood.

As a result, CHEO’s objective is to more than double their ability to diagnose unsolved rare disease and build the tools required to improve rare disease diagnosis worldwide.

What's happening at CCHF?

As our team continues to work from home, we’re making sure to highlight the amazing work of healthcare workers at children’s hospitals right now. We’re also celebrating the efforts made by our partners to support their employees, customers and donations made to relief efforts. What’s most important right now is that we come together.

Also – it’s our 1st digital birthday! It’s been a whole year since we’ve launched our website, and couldn’t be happier than to share with you some new financial statistics on everything we were able to accomplish together in one year. Stay tuned to our social channels to stay updated on our birthday celebrations. #InOneYear

Teddy bear on a bed covered by a blanket

April 7th is World Health Day and April 25th is DNA Day.

Since it’s inception in 1948, World Health Day has shone a light on a different health-specific theme each year. 2020 has been deemed the year of nurses and midwives, celebrating the lifesavers at the front lines supporting children’s health.

DNA Day commemorates the day in which the findings on DNA structure was published to the world, marking a significant achievement that has since changed the lives of millions of kids who have been affected by genetic disorders, cancer and countless other health complications.

Eli,12, Brain-lung-thyroid syndrome

At age one, Eli wasn’t hitting his milestones and was referred to CHEO’s genetics team.

For the next 10 years, Eli’s treatment followed a winding path through CHEO that included multiple tests and visits to many departments.

This led to the diagnosis of a rare condition called Benign Hereditary Chorea or Brain-Lung-Thyroid syndrome.

Meet Eli

April 2020