Blog
-
Congenital Heart Futures Act of 2017 (S.477/H.R.1222)
Revised Bill Language: H.R.1222 – Congenital Heart Futures Reauthorization Act of 2017, Engrossed Amendment Senate (12/12/2018) UPDATE, December 21, 2018: The Congenital Heart Futures Reauthorization Act was signed into law. We can all celebrate that a federal law was passed that will help shape the future for the CHD Community, across the lifespan, through robust funding…
-
Summer Fun with Artyom and Taosies!
This week we will hear from Artyom and Taosies, two heart brothers who love to have fun during the summer! Together, they share tips on how to beat the heat and have a blast this summer! The thought of summer conjures images of sunshine, swimming pools, road trips, neighborhood block parties, and lots of time…
-
Summer Fun at Camp Odayin
For the month of July, we are bringing you stories of how CHD families enjoy the summer, along with tips and tricks on how CHD patients can beat the heat. This week we will hear from Laura Hoagland, an adult CHD patient and avid adventurer. Laura shares her experience with Camp Odayin and explains how…
-
Tips to Beat the Summer Heat
The summertime sunshine can be a welcome treat after a long winter, but it can also be dangerous. Many people with complex CHD have difficulty tolerating the summer heat. Here’s a reboot of what our community of families and patients shared with us about what they do to beat the heat during the hottest season….
-
Response to 2019 U.S. News and World Report Congenital Cardiac Center Rankings
PCHA would like to express our concerns over the recently published U.S. News and World Report U.S. News Rankings. We are encouraging patients and families to use caution when utilizing this tool when making important treatment decisions. Response to 2019 US News and World Report Pediatric Congenital Cardiac Center Rankings: Families deserve transparent information that…
-
A New Plan
Finding out your child will be born with a heart defect may cause some of the plans you have for them to disappear, it may cause you to question whether you can be the parent to them that you hoped. Read how dad, Matt, learned to adjust his dreams for his son and encourage him to do HIS best.
-
All Life’s Moments Are Brush Strokes
Like Monet’s San Giorgio Maggiore at Dusk, our lives are full of small strokes of color that require us to take a step back to see the bigger picture. Heart Dad, Chris Perez, shares how he’s learned to view his family’s journey with CHD this way.
-
To My Mom…
In this open letter, one HLHS warrior shares what he loves most about his mom.
-
Mother’s Day Q&A
In this week’s blog, amazing heart moms, warriors, and 2 junior advocates talk motherhood and what they love most about their moms in this mother’s day Q&A.
-
The Unexpected Defibrillator
Growing up with CHD and constantly facing your own mortality is a very scary reality. For many warriors, anxiety can arise from the myriad of worries. Today we’ll hear from Danielle Sikorski, a heart warrior who shares her personal experience and how she tries to mitigate some of the stresses her daily life. Please note that…
-
Action Alert: Tell your Senator to Sign-On
In December 2018, the Congenital Heart Futures Reauthorization Act became law. The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years. This is 2.5 times the current funding of $4 million. Therefore we need to strongly advocate for full funding of the $10…