Children's Cardiomyopathy Foundation

Our 2023 Annual Report is now online! Read about our efforts to build and strengthen connections. We extend our deepest gratitude to all our families, donors, and partners for their unwavering support in helping us fulfill our mission to support children with #cardiomyopathy and their families. View our 2023 Annual Report: https://loom.ly/ccTggdQ

Don’t miss our Experts on Pediatric Cardiomyopathy webinar on July 25 at Noon ET featuring our co-chairs, Drs. Steven Lipshultz, Teresa Lee, and Thomas Ryan, from the 6th International Conference on Cardiomyopathy. Conference highlights will be presented and discussed. Register here: https://loom.ly/0d6xyEo

Save the date on July 25 at Noon ET for our next Experts on Pediatric Cardiomyopathy webinar featuring our co-chairs, Drs. Steven Lipshultz, Teresa Lee, and Thomas Ryan, from the 6th International Conference on Cardiomyopathy. The panel will present highlights from the Conference. Register here: https://loom.ly/0d6xyEo

Our corporate partner, Tenaya Therapeutics, has developed a new educational resource on gene therapy, Learn About Gene Therapy for Heart Conditions, which explains how AAV gene therapy works to treat genetic conditions. https://loom.ly/ySFPOPA Tenaya Therapeutics is a biotechnology company developing gene therapies to address the underlying drivers of heart disease including hypertrophic, dilated, and arrhythmogenic right ventricular cardiomyopathy.

Lisa W. Yue, CCF board president, and CCF corporate partner Tenaya Therapeutics ( Wendy Borsari and Lori Ann Correia, MS, CGC) attend the 4th Annual Gene Therapy Patient Engagement Summit in Boston on May 30-31. The conference focused on engagement methods for incorporating the patient voice in gene therapy development, which is relevant to clinical trials being planned for cardiomyopathy.

As a result of CCF’s collaboration with the Pediatric Cardiomyopathy Registry and Kyle John Rymiszewski Foundation, two treatment-related research articles were published in Pediatric Cardiology in May. NT‑proBNP for Predicting All‑Cause Death and Heart Transplant in Children and Adults with Heart Failure (Schmitt, et al.) https://rdcu.be/dHvgv Genetic Testing Resources and Practice Patterns Among Pediatric Cardiomyopathy Programs (Godown, et al.) https://rdcu.be/dHguD Article link is provided under the Creative Commons Attribution 4.0 International License

The American College of Cardiology (ACC) and the American Heart Association (AHA) recently released a new clinical guideline for managing individuals diagnosed with hypertrophic cardiomyopathy (HCM). Fellow CCF collaborators, Drs. Carolyn Ho, Seema Mital , Sharlene Day and Jeffrey Kim are among the authors. The updated recommendations for adult and pediatric patients are based on recent evidence about HCM treatment, including new pharmacologic management, recreational and competitive sports participation, and sudden cardiac death risk stratification, especially in pediatric patients. For a summary, view the ACC/AHA Clinical Practice Guideline. https://loom.ly/6cDOlK8 #JACC #cvHCM #ClinicalGuidelines #JACCJournals #cardiology #instacardio

Last week our partner Cytokinetics announced open enrollment for CEDAR-HCM, a clinical trial of Aficamten in a pediatric population with symptomatic obstructive hypertrophic cardiomyopathy (oHCM). The multi-center study will look at the efficacy, safety, and tolerability of Aficamten in adolescents (12 to <18 years old) and children (6 to <12 years old) with oHCM. For details about this clinical trial, please visit https://bit.ly/4axVzUA and speak to your child’s cardiologist. More information about CEDAR-HCM is available at press release. https://loom.ly/jJOOvbs #hypertrophiccardiomyopathy #clinicaltrial #cardiomyopathy #cure

Join us tomorrow with our distinguished co-chairs, Drs. Steven Lipshultz, Teresa Lee, and Thomas Ryan for the 6th International Conference on Pediatric Cardiomyopathy. The conference proceedings have led to articles in peer-reviewed journals, offering valuable guidance to physicians in managing children with cardiomyopathy, leading to earlier diagnosis and enhanced clinical outcomes. Reserve your place today: www.pcmconf.org

Thank you to our sponsors of the 6th International Conference on Pediatric Cardiomyopathy. Register now to be part of this important gathering of experts in the field: www.pcmconf.org.