Children's Cardiomyopathy Awareness Month Highlights Pediatric Cardiomyopathy

Children’s Cardiomyopathy Awareness Month put the focus on pediatric cardiomyopathy throughout the month of September with the support of 17 national awareness partners. Throughout the month, partners participated in a number of CCF-led awareness activities to educate the public about the seriousness of cardiomyopathy and the measures needed to protect youth from sudden cardiac death. Partners supported with social media postings and newsletter articles focused on the signs and symptoms of cardiomyopathy, along with the importance of knowing one’s family heart history.

During the month, CCF's Cardiomyopathy Centers of Care Program recognized 42 medical centers in the U.S. and Canada. These specialty centers were recognized for their high-quality cardiac care and comprehensive care approach to treating children with cardiomyopathy. 
 
The hallmark event for Children’s Cardiomyopathy Awareness Month was CCF’s 6th Annual Walk for a Cure, which was held virtually this year. Walkers from around the country supported CCF by organizing walk teams to raise funds for CCF’s family support services and resources. Families are continuing to plan walks even past September to generate awareness of pediatric cardiomyopathy in their communities.

Awareness Month Partners & Activities
Walk for a Cure Event

CCF and KJR Pediatric Cardiomyopathy Research Scholar Announced 

Suzanne M. Mone, M.D., M.S. has been named the 2020 recipient of the Children's Cardiomyopathy Foundation (CCF) and Kyle John Rymiszewski Foundation (KJR) Research Scholarship. The $50,000 award is a 12-month senior research scholar position that will take place at the University at Buffalo. The intent of the scholarship is to foster the next generation of researchers to address the specialized needs of children with cardiomyopathy and their families.

Dr. Mone is a pediatric cardiologist with prior publications in pediatric cardiomyopathy. She recently practiced in the Atlantic Health System in northern New Jersey, and in December will join the Pediatric Cardiac Consortium of Upstate New York as a Clinical Associate Professor of Pediatrics at the University of Buffalo. She will also be assisting in the coordination and implementation of pediatric cardiovascular surgical services at the Oishei Children’s Hospital and providing clinical cardiology services in the Western New York region.

As the Third International Senior Scholar in Pediatric Cardiomyopathies, Dr. Mone will work collaboratively with CCF, KJR, and the NIH-supported Pediatric Cardiomyopathy Registry team to continue work in understanding cardiomyopathy and assist in the care of patients and their families.

CCF Seeks Feedback for New Storytelling App

The Children's Cardiomyopathy Foundation (CCF) recognizes the importance of giving voice to patients and families living with a chronic condition like cardiomyopathy. CCF is working on a new storytelling resource, which would allow individuals to record their story using their mobile phone and a simple, self-guided recording app. Individuals would have the option of sharing their recordings with friends, family, or on CCF's website that would be searchable by others. As stories are collected, affected families can inform and influence people to learn more about pediatric cardiomyopathy.

A survey was recently distributed to seek user feedback. Based on initial survey findings, there is strong interest in the concept, and close to 70 percent of respondents were enthusiastic and comfortable about sharing their story publicly with others. Additionally, 85 percent of respondents were most willing to share stories related to their or their child's diagnosis and treatment to help educate others. Advocating for change and medical improvements was the second most popular storytelling topic. CCF continues to seek feedback and would like to encourage more families to participate in the survey to communicate their preferences. The goal is to launch the new storytelling app in February during National Heart Month.

Storytelling App Survey

CCF-Funded Studies to be Recognized at AHA Conference

Study findings from two CCF-funded research studies are being presented at the American Heart Association’s Scientific Sessions, which is now virtual and taking place November 13-17.
 
Study findings from Jennifer L. Conway, M.D., FRCPC will be featured in a poster presentation, “Balancing Exercise Risk with Cardiovascular Health in Pediatric Hypertrophic Cardiomyopathy.” Dr. Conway of Stollery Children’s Hospital in Alberta, Canada was the recipient of a CCF 2019 Research Grant for “Cardiovascular Disease Risk Profile in Children with Hypertrophic Cardiomyopathy.” Her study investigated cardiovascular disease risk profiles and behaviors of children with hypertrophic cardiomyopathy (HCM) to determine if children with HCM are at a greater risk for acquired cardiovascular disease compared to the general population. The study also sought feedback from children and their parents on their perceptions of a heart-healthy lifestyle and barriers to achieving such a lifestyle.

The second study that will be recognized is Melanie Groper, M.D.’s “Distinct Biomarker Profiles for Pediatric and Adult Dilated Cardiomyopathy,” which will be presented at the Young Hearts Early Career Investigator session. The findings are based on a 2018 CCF-funded grant with the Pediatric Cardiomyopathy Registry. “Distinction of serum biomarkers of heart failure between children and adults with dilated cardiomyopathy” was conducted with Kathleen Simpson, M.D. at Washington University School of Medicine, St. Louis.

Research Study Summaries

CCF 2020 Annual Appeal: Hope and Optimism

During these challenging times, CCF’s 2020 annual appeal is focused on hope and optimism for the future. The campaign will launch in early November with mailers and continue with emails and social media postings. CCF encourages our community of families, physicians, and supporters to engage on a deeper level and promote our message of hope and optimism for year 2021.

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