Project 1 in 100

Project 1 in 100 Awareness that rises. For the 1 in 100 born with CHD. Join the movement

Virtual 5K: https://www.project1in100.org/events/virtual5k

05/28/2026

The mental health side of CHD is so important to recognize and discuss. Open communication is essential to the health and wellness of those affected and the families who surround them.

You don’t need to navigate this alone. Connect with us if you have questions or if you would like to share a story you think would help the CHD community.

May is Mental Health Awareness Month. For those living with CHD, mental health is heart health. Sources: American Heart ...
05/11/2026

May is Mental Health Awareness Month. For those living with CHD, mental health is heart health.

Sources: American Heart Association, JACC, BJSM

"I needed to remind myself that I can do hard things. That I can sit with discomfort and keep going anyway. Working out ...
05/08/2026

"I needed to remind myself that I can do hard things. That I can sit with discomfort and keep going anyway. Working out is therapy in motion. It's showing up for myself on the days my mind feels heavy" -

Such incredible words from Meagan. Swipe to the next slide to see all her thoughts! Thank you for sharing, Meagan!

Let us know below - why do you workout? What are you moving through? How can we best support?

This mental health awareness month we are committed to increasing the stories and experiences of this entire community, supporting one another, and shattering any stigma. Mental health MATTERS!

mentalhealth chdawareness

Thank you Dr. Fontan! How many Fontan patients/parents do we have here? Comment below and connect with others! Thank you...
04/25/2026

Thank you Dr. Fontan! How many Fontan patients/parents do we have here? Comment below and connect with others!

Thank you for sharing,

04/18/2026

600+ miles
3 countries
37 states

100 hours. One community.

Together, we turned movement into momentum, raising awareness for congenital heart disease across miles, states, and borders.🎈

🚨 Event Alert! MD and DE families!!!
04/17/2026

🚨 Event Alert! MD and DE families!!!

As promised — (Marie-Jo) just dropped the science behind why movement matters for CHD hearts, and it’s a must-read for ...
04/10/2026

As promised — (Marie-Jo) just dropped the science behind why movement matters for CHD hearts, and it’s a must-read for every CHD patient/family.

For those with Fontan circulation, the research is striking: the leg muscles literally do the work of the missing ventricle. Muscle loss isn’t just a fitness issue, it’s a predictor of hospitalization. And across hundreds of Fontan patients in exercise studies, the safety data is overwhelmingly reassuring.
But this isn’t just a Fontan story. Marie-Jo also breaks down research showing that for CHD patients across the spectrum — even those with simple, repaired defects — years of restriction and overprotection have taken a real toll on mental health. Studies show it’s not disease severity that predicts whether CHD kids stay active, it’s whether they believe they CAN. Self-efficacy. Confidence. The feeling that their body is something to trust, not fear. Movement builds that.

This isn’t wellness fluff. This is peer-reviewed research, translated into language we can actually understand. Swipe through for the highlights, then go read the full article — search “Between the Beats” on Substack. Read the whole thing.

And today, the 100th day of the year, we’re putting this science into action. 🫀🏃🚴‍♀️

The Move With Heart Virtual 5k is LIVE. You have 100 hours to complete a 5k in honor of the 1 in 100 born with CHD. Walk, run, ride, roll — however you move, it counts.

Join us on Strava → search “Project 1 in 100 Move With Heart” in Clubs, record your workout, and share it.
Free. Virtual. For every heart. Sponsored by .medical
Sign-up HERE: 🔗 project1in100.org/events

04/10/2026

CHD has got nothing on these 3!! and connected through the gym, and then realized they were both CHD families: with Connor and Kali's son having an HLHS diagnosis just like Mike's wife,

Mike is also a CHD patient, who wasn't diagnosed until he had a stroke at the age of 31. 3 weeks later he had 2 large atrial sepal defects repaired. 3 in 100, right in the Annapolis, MD area!

Mikes story also speaks to why this movement is so powerful. No one should have to become a stroke survivor to find out they have CHD.

We want to hear from our followers: who here received an adulthood CHD diagnosis?? If you know someone, please share Project 1 in 100 with them! This is a space for ALL!

As Mike said right after this workout, "We move our body’s for their son and my wife! Half the heart, twice the fight, and we aren’t ever gonna stop!"
We are all moving for you, too, Mike!

Thank you to our 5K ambassadors Connor and Kali with - please go check them out and show them all your support! We are honored to partner with you!

❤️

04/09/2026

Trusted partnerships are the foundation of any thriving community. When people and organizations align around shared values and mutual respect, they create a sense of consistency and reliability that others are drawn to. These relationships foster collaboration, amplify impact, and make it easier to navigate challenges together.

Over time, trust builds momentum—turning small efforts into meaningful growth. Strong partnerships don’t just expand a community; they deepen it, creating connections that are resilient, supportive, and lasting.

We are incredibly grateful for our trusted partnership with

is joining us - will YOU?!

04/08/2026

Our Move With Heart Ambassadors are ready to rock!

Join us this weekend, in any way that feels good 🎈

Registration is still open - link in bio

Be sure to tag us in your movement, and check out .medical while you're at it!

Marie-Jo just explained blood speckle tracking (basically a superpower for seeing inside Fontan hearts) in a way that ac...
04/07/2026

Marie-Jo just explained blood speckle tracking (basically a superpower for seeing inside Fontan hearts) in a way that actually makes sense. She breaks down the research, the barriers, and what it all means for us/our kids.

But here’s the real exciting part: her NEXT post is all about exercise and CHD. We can’t wait—we’ll share here when it drops.

Read the full piece — The Canary in the Coal Mine on Substack: .

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