CCF at the Forefront of Providing Information on COVID-19

The Children's Cardiomyopathy Foundation (CCF) has responded to the coronavirus COVID-19 pandemic by providing reliable sources of information to families of children with cardiomyopathy and taking the initiative to collect data on the impact of this novel virus on children with cardiomyopathy.

In an attempt to better understand the impact of coronavirus on children with cardiomyopathy, CCF recently distributed an online survey to 2,260 patients and 590 physicians. The collected data and findings will be shared with the medical community to provide baseline information and guidance on COVID-19 treatment for children. Based on preliminary findings, over 40% of parents felt that their child experienced COVID-19 symptoms in the last 3 months. From the 50% who sought medical attention, only 5% were tested. Fortunately, all who were tested were found to be negative, which is consistent with the absence of pediatric cardiomyopathy cases being reported by major medical centers.

CCF also facilitated a webinar with Children's Hospital of Montefiore in New York City, featuring Drs. Daphne T. Hsu, Chief of Pediatric Cardiology and Margaret Aldrich, Director of Pediatric Infection Control. The webinar covered important information about COVID-19 as it relates to children with cardiomyopathy. As an additional patient resource, CCF has created a COVID-19 information section on CCF Connect's online community. CCF will continue to provide updates as new information becomes available.

Complete patient survey
Complete physician survey
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Cardiomyopathy HEARTS Act Introduced with CCF's Support

The Children's Cardiomyopathy Foundation (CCF) took an active role in getting the Cardiomyopathy Health Education, Awareness, Research, and Training in the Schools (HEARTS) Act (H.R.6166) introduced March 10. The bill, introduced by Reps. Andy Kim (NJ-03) and Andy Barr (KY-06), is the first bi-partisan legislation on cardiomyopathy. The Cardiomyopathy HEARTS Act focuses on the research and education components that are necessary to improve the survival rate for children with cardiomyopathy.

Specifically, the bill will evaluate current cardiomyopathy research initiatives funded by the National Institutes of Health (NIH) and request that the Centers for Disease Control and Prevention (CDC) collect and analyze surveillance data related to the impact, prevalence, and epidemiology of cardiomyopathy across a patient’s lifespan. The bill will also direct the CDC to implement an awareness campaign that includes developing educational materials on the signs and symptoms of cardiomyopathy, risk factors for sudden cardiac arrest, placement of automated external defibrillators (AED), CPR/AED training in schools, and the implementation of a cardiac emergency response plan. These resources will be disseminated to school administrators, educators, school nurses, coaches, and families through state educational agencies, health departments, and other medical/ health professionals. 

This summer, CCF plans to meet with more members of Congress to increase awareness of pediatric cardiomyopathy and ask them to co-sponsor the bill. In the meantime, cardiomyopathy-affected families are encouraged to write to their district representative, share their story, and ask them to support this important piece of legislation.

Learn about the bill
Contact a representative
Cytokinetics Provides Funding for CCF's Storytelling Project

The Children's Cardiomyopathy Foundation (CCF) was recently awarded funding from Cytokinetics, a San Francisco-based biotech firm, for CCF's innovative story-telling program.

The proposed project, "Stories from the Heart," will document the experiences and insights of patients and families affected by cardiomyopathy. CCF recognizes the value of giving voice to those living with cardiomyopathy and using their stories to understand the social impact of living with a chronic heart condition and to evaluate treatment practices. Funding will go towards developing a mobile-friendly app that allows patients and families a convenient way to record their stories related to cardiomyopathy and share their experiences with their family, friends, and with the broader cardiomyopathy community. The grant will also support a communications fellow to assist in the creation, management, and promotion of the storytelling communication platform.

The project is in line with Cytokinetics' business focus on diseases of impaired muscle function. Currently, the company is developing therapies to improve muscle function, including a cardiac muscle activator for the potential treatment of heart failure and a cardiac myosin inhibitor for the potential treatment of hypertrophic cardiomyopathy.

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