CCF, in partnership with the American Camp Association (ACA) and One Beat CPR, celebrates National CPR and AED Awareness Week (June 1-7) with the launch of the Third Annual #mycampAED Scavenger Hunt. The fun social media program encourages parents and campers to take photos of AEDs at camp and post them online with #mycampAED. The awareness program puts the focus on identifying automated external defibrillators (AEDs) at camps across the nation and stresses the importance of knowing its location and knowing what to do in a cardiac emergency. A Philips HeartStart Onsite AED provided by One Beat will be awarded to a randomly selected camp in need of an AED.

 

Download AED Scavenger Hunt sheet

Download AED Scavenger Hunt map

CCF is working with Dr. Kristi Glotzbach, a pediatric cardiologist at the Montefiore Children's Hospital in New York, on a new research study. Dr. Glotzbach and her colleagues are interested in learning from patients and families what it is like to live with cardiomyopathy. The study is recruiting parents, caregivers and diagnosed children ages 8-18 through social media and CCF's family network to complete a short online survey. Frequent research updates will be posted on the study Facebook page, along with new links to research in the field.

 

Every year approximately 1,300 children are diagnosed with cardiomyopathy, yet there are very few pediatric studies focused on the impact of the disease on patient and family quality of life. The CCF-funded study, Improving the Lives of Children and Families Living with Cardiomyopathy, will look at how medications, procedures and frequent trips to the doctor may affect everyday life with families living with cardiomyopathy. Findings will help medical professionals to better understand key concerns and address the emotional health, neurodevelopment and psychosocial functioning in cardiomyopathy patients and their families.

View study site

 

The Pediatric Cardiomyopathy Registry (PCMR) Study Group held a two-day working group meeting at the New England Research Institute in May. Funded by CCF, the meeting's purpose was to discuss preliminary findings from several multi-center studies, provide updates on study publications and writing groups, and discuss future PCMR studies.

 

Sixteen study investigators representing 12 PCMR research sites attended the meeting in Boston. Participants discussed current study publications, including the second issue of Progress in Pediatric Cardiology, which covers proceedings from CCF's Third International Scientific Conference. The group also reviewed patient enrollment strategies and protocols on two main studies supported by CCF: Genotype-Phenotype Associations in Pediatric Cardiomyopathy and Cardiac Biomarkers in Pediatric Cardiomyopathy.

 

In addition to planning for the next set of PCMR research publications and the National Heart, Lung, and Blood Institute grant renewal, the group also discussed ideas for new studies focused on identifying genes and gene expression as predictors of outcome, developing randomized clinical trials to investigate new therapies, and incorporating 'quality of life' outcomes into future PCMR studies. 

Thanks to BTIG Managing Director Ilan Adika, CCF was nominated for the second year to receive proceeds from BTIG Charity Day. More than 50 celebrity partners participated in the April 28 fundraiser organized by the global financial services firm. BTIG raised $13,500 for CCF through trading day commissions.

 

"As a BTIG employee, I am proud to nominate CCF and have the Foundation chosen as a beneficiary," says Ilan. "There's no charity more worthy than CCF and I am proud to be a supporter of the important work they do."

 

View BTIG Charity Day site 

 

The 2014 Annual Report, "Everyone Has a Story" is now downloadable from CCF's website. 2014 was an eventful year

for CCF with many achievements. Two highlights include CCF's Third International Scientific Conference that brought together more than 60 leading researchers and clinicians to determine the future direction of pediatric cardiomyopathy research, and the launch of the Children's Cardiomyopathy Awareness Month with thirteen national partners to educate the public about the signs and risk factors associated with cardiomyopathy.