Children's Cardiomyopathy Foundation

The Children's Cardiomyopathy Foundation (CCF) is a non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle.

[Children's Cardiomyopathy Foundation @CCFheartkids]

Myth: Pediatric cardiomyopathy only affects babies and young children.

Fact: Pediatric cardiomyopathy can develop at any age, from infancy through adolescence and even into young adulthood.

Understand the facts. Raise awareness. Support early recognition.

[Global Heart Hub @GlobalHeartHub]

⚠️ Not all heart conditions begin with symptoms. Sometimes, the first clue is in your family 👨‍👩‍👧‍👦.

Cardiomyopathy is a disease of the heart muscle ❤️ that affects the heart’s ability to pump blood around the body. It can affect people of all ages and can develop for different reasons but is often passed down genetically 🧬.

For many people, the warning signs of cardiomyopathy come from the patterns that exist across generations, in their own family tree. Understanding these patterns can help you ask new questions, identify potential risks and take action earlier 🎯.

Talk to your family about their heart health. If something doesn’t feel right, 🩺 speak to your doctor about what it could mean for you. Think Cardiomyopathy. Know Your Heart History.

June is Cardiomyopathy Awareness Month ❤️, led by the Cardiomyopathy Patient Network at Global Heart Hub — the international alliance of heart patient organisations. 🌐 Learn more: https://t.co/6WsJaglpuw

#Cardiomyopathy #ThinkCardiomyopathy #HeartHistory

[Children's Cardiomyopathy Foundation @CCFheartkids]

Our newly updated Understanding Restrictive Cardiomyopathy (RCM) booklet is now available. Learn about this rare form of cardiomyopathy.
Download:https://t.co/ZStEouMvDq

[Global Heart Hub @GlobalHeartHub]

Understanding your heart history could help you recognise risks earlier and take action sooner 🎯.

Cardiomyopathy is a disease of the heart muscle ❤️ that affects the heart’s ability to pump blood around the body. It can affect people of all ages and can develop for different reasons but is often passed down genetically 🧬.

For many people, the warning signs of cardiomyopathy come from the patterns that exist across generations 👨‍👩‍👧‍👦, in their own family tree. Understanding these patterns can help you ask new questions, identify potential risks and take action earlier.

💬 Start the conversation by asking simple questions today. It could make a life-changing difference.  Think Cardiomyopathy. Know Your Heart History.

June is Cardiomyopathy Awareness Month ❤️, led by the Cardiomyopathy Patient Network at Global Heart Hub — the international alliance of heart patient organisations. 🌐 Learn more: https://t.co/6WsJaglpuw

#Cardiomyopathy #ThinkCardiomyopathy #HeartHistory

[SickKids Cardiac Precision Medicine Program @SKCardPrecision]

Drs @seema_mital, Joseph Rossano and Charles Canter shares insights on the SCOUT-HCM trial of mavacamten in adolescents at the @CCFheartkids (Children's Cardiomyopathy Foundation) webinar—advancing targeted therapies for pediatric HCM.

Watch here: https://t.co/bk3cmP6Fc0

[Global Heart Hub @GlobalHeartHub]

Cardiomyopathy can run in families, sometimes across generations 👨‍👩‍👧‍👦.

If heart problems run in your family, it’s worth asking why. Understanding your heart history could help you take action earlier 🎯.

Talk to your family. 🩺 Speak to your doctor.

Think Cardiomyopathy. Know Your Heart History.

June is Cardiomyopathy Awareness Month ❤️, led by the Cardiomyopathy Patient Network at @GlobalHeartHub — the international alliance of heart patient organisations. 🌐 Learn more: https://t.co/6WsJagkREY

#Cardiomyopathy #ThinkCardiomyopathy #HeartHistory

[Global Heart Hub @GlobalHeartHub]

Knowing if you have an inherited type of cardiomyopathy is important because it can impact the risk for other family members 👨‍👩‍👧‍👦.

Cardiomyopathy is a disease of the heart muscle ❤️ that affects the heart’s ability to pump blood around the body. It can affect people of all ages and can develop for different reasons but is often passed down genetically 🧬.

Talk to your family about their heart health. If something doesn’t feel right, speak to your doctor about what it could mean for you 🩺. Think Cardiomyopathy. Know Your Heart History.

June is Cardiomyopathy Awareness Month ❤️, led by the Cardiomyopathy Patient Network at Global Heart Hub — the international alliance of heart patient organisations. 🌐 Learn more: https://t.co/6WsJagkREY

#Cardiomyopathy #ThinkCardiomyopathy #HeartHistory

[Children's Cardiomyopathy Foundation @CCFheartkids]

The VALOR Study is testing an investigational study medicine to see if it can safely be given to children and whether it may help improve their heart failure. Enrollment is currently open to children aged 2-17 years old. For more information: https://t.co/c5PtOPmY1M

[Children's Cardiomyopathy Foundation @CCFheartkids]

Learn about preliminary results from the SCOUT-HCM clinical trial studying mavacamten in adolescents as a potential new therapy for obstructive HCM.
Register today: https://t.co/c3S324jTcd
This presentation is not affiliated with or endorsed by Bristol Myers Squibb.

[Children's Cardiomyopathy Foundation @CCFheartkids]

At @ASGCTherapy Annual Meeting, Children's Cardiomyopathy Foundation and @TenayaThera presented research on parent perspectives toward gene therapy in pediatric cardiomyopathy.
Families highlighted the need for safe treatments, genetic testing, and counseling. #ASGCT2026

[Tenaya Therapeutics @TenayaThera]

Tenaya partnered with a leading pediatric advocacy group and treatment center, @CCFheartkids and @DdccLinic, to survey parents whose children have cardiomyopathy about their attitudes towards gene therapy. Results from the survey were presented at @ASGCTherapy yesterday.

[Children's Cardiomyopathy Foundation @CCFheartkids]

We’re excited to our 2025 Annual Report!

In 2025, together we expanded support for families, strengthened partnerships with clinicians and industry leaders, and advanced important pediatric cardiomyopathy research. Read the Report here: https://t.co/Ut1VwsDXLs

[Children's Cardiomyopathy Foundation @CCFheartkids]

The VALOR Study is testing an investigational study medicine to see if it can safely be given to children and whether it may help improve their heart failure. Enrollment is currently open to children aged 2-17 years old. For more information visit: https://t.co/c5PtOPnvRk

[Children's Cardiomyopathy Foundation @CCFheartkids]

Our educational materials have been updated!
“Understanding Hypertrophic Cardiomyopathy” is a comprehensive guide to hypertrophic cardiomyopathy (HCM) a condition where the heart muscle becomes abnormally thick making it hard to pump blood. https://t.co/aJdKPZcS6D

[Children's Cardiomyopathy Foundation @CCFheartkids]

The VALOR Study is testing an investigational study medicine to see if it can safely be given to children and whether it may help improve their heart failure. Enrollment is currently open to children aged 2-17 years old. For more information visit: https://t.co/c5PtOPmY1M

[Children's Cardiomyopathy Foundation @CCFheartkids]

Proud to attend the @newyorkbio Summit 2026 uniting leaders to explore how patient perspectives can shape the future of healthcare. Honored to have CCF family member Mariclare Rivera share her powerful journey of her daughter's diagnosis w/ HCM and their path to heart transplant.

[Children's Cardiomyopathy Foundation @CCFheartkids]

CCF was proud to join the global conversation shaping the future of heart care at the @ISHLT 46th Annual Meeting in Toronto. Great connecting w/ Justin Godown of @Cytokinetics, Melissa McQueen of @transplantfams, and @ashwinlalmd

[Children's Cardiomyopathy Foundation @CCFheartkids]

The VALOR Study is testing an investigational study medicine to see if it can safely be given to children and whether it may help improve their heart failure. Enrollment is currently open to children aged 2-17 years old. For more information visit: https://t.co/c5PtOPmY1M

[Children's Cardiomyopathy Foundation @CCFheartkids]

Now Live! Join @hj_tadros and Abigail M. Yesso, MS, CGC of Texas Children’s Hospital for a webinar on inherited cardiomyopathies and genetic testing.
https://t.co/cJUeRtNQac

[Children's Cardiomyopathy Foundation @CCFheartkids]

Hello from ISHLT! Kathy Swenson, CCF executive director, and Leah Mumm, director of family & physician relations, are in Toronto for the 46th Annual Meeting @ISHLT, and connected w/ Melissa McQueen (center) from @transplantfams.