CCF Announces 2014 Research Grant Recipients

CCF will award $150,000 to three new studies for 2014. Through CCF's competitive research grant program, seed funding will be awarded to David Fedida, Ph.D of the University of British Columbia; Anne M. Murphy, M.D. of Johns Hopkins University and Beata M. Wolska, Ph.D. of University of Illinois at Chicago. This brings the total amount that CCF has committed to research and treatment initiatives to more than $2.3 million.  

CCF medical advisors met in Dallas prior to the American Heart Association Scientific Sessions to review and discuss all submitted research proposals. All three CCF-funded studies will focus on understanding causes and exploring new therapeutic options for hypertrophic cardiomyopathy (HCM). The funded studies include: "Late INa Contributes to Diastolic Dysfunction in Hypertrophic Cardiomyopathy," "Translational Proteomics in Hypertrophic Cardiomyopathy," and "Pak1 as a Target for New Treatment of HCM." 

HCM is the second most common form of pediatric cardiomyopathy and the leading cause of sudden death in the young. The CCF-funded studies will look at specific protein mutations to understand disease variability and progression that could lead to therapies to stop the advancement of HCM.

View 2014 research abstracts

Bronx Family Spends Holidays at Home Thanks to CCF's Assistance 

CCF is providing much needed financial assistance to a Bronx, N.Y., single mother with two children diagnosed with cardiomyopathy. The disease lead to her daughter receiving not one, but two heart transplants. 

Beliany Tamariz has been struggling to pay her family's bills since her daughter, 16-year-old Johendy, had her second heart transplant two years ago. Beliany had to quit her job to take care of Johendy who requires constant care. This fall, the family was in danger of losing their home due to unpaid rent on their small Bronx apartment. CCF's grant will pay for the family's overdue rent among other bills needed to stay in their home. 

"We are so happy to help the Tamariz family in time for the holidays," says Lisa Yue, president and founder of CCF.

CCF's Family Assistance Program assists qualifying low-income families with cardiomyopathy-related medical and non-medical needs. Since the program's launch in December 2011, the program has awarded more than $24,000 to 10 U.S. families.

View CCF's press release

Lisa Yue, founding executive director of CCF, joined 

Representative Frank Pallone (D-NJ6) and NJ Assemblyman Patrick Diegnan December 9 at a press conference at South Plainfield Middle School, N.J. The goal was to call attention to sudden cardiac arrest (SCA) in the young and the legislation needed to keep students safe in school. 

In 2010, two Middlesex County, N.J. students, Kittim Sherrod and Brandon James, both collapsed during school athletic activities. Each had an undiagnosed form of cardiomyopathy, which caused their death.

Getting more children with cardiomyopathy properly diagnosed and treated is a priority for CCF. "It is an honor to be here today with Congressman Pallone and Assemblyman Diegnan," said Lisa Yue. "Congressman Pallone has been a steadfast ally on this issue, and we continue to work together on legislation to identify more children with cardiomyopathy that may be prone to sudden cardiac arrest."  

View CCF's press release 

The National Institutes of Health and the Centers for Disease Control and Prevention are collaborating to create a Sudden Death in the Young Registry. The registry will collect comprehensive, population-based information on sudden unexpected death in youths up to age 24 in the U.S. The risk for sudden death in the young increases greatly when a person has a heart related condition like cardiomyopathy.

Currently sudden cardiac deaths are not routinely or systematically reported, and there are no agreed upon definitions or standards for data collection. The new registry will provide important information on incidences, causes, and risk factors for sudden death in the young, which ultimately can improve diagnosis and prevention.

For the past year, CCF has been advocating for this registry, working with the Sudden Cardiac Arrest Coalition, National Heart, Lung and Blood Institutes and Representative Jim Gerlach (PA-6) who was an early proponent of this registry.

 View NIH press release 

The Children's Cardiomyopathy Foundation (CCF) helped fund three studies, which were listed in Circulation as the most read articles published on the topic of pediatric cardiology within the last two years. Circulation, the Journal of the American Heart Association, ranks first among journals on the cardiac and cardiovascular systems. The three CCF funded articles relate to study findings from the Pediatric Cardiomyopathy Registry (PCMR), a nationwide patient database supported in part by CCF and the National Heart, Lung and Blood Institute.

All three articles, "Outcomes of Restrictive Cardiomyopathy in Childhood and the Influence of Phenotype: A Report from the Pediatric Cardiomyopathy Registry," "Competing Risks for Death and Cardiac Transplantation in Children with Dilated Cardiomyopathy: Results from the Pediatric Cardiomyopathy Registry" and "Survival in Childhood Pulmonary Arterial Hypertension: Insights from the Registry to Evaluate Early and Long-Term Pulmonary Arterial Hypertension Disease Management," cite CCF as a funding source. 

View Circulation article 

6th Annual All-In for A Cure

No-Limit Texas Hold' Em Tournament

Feb 12, 2014

Providence, New York City  

Details

Hoodies for Hearts

Psychological Adjustment to Medical Illness

Anne Farrar-Anton, MD

Hackensack University Medical Center

January 27, 2014 - February 3, 2014 

Familial Forms of Cardiomyopathy

J. Carter Ralphe, MD

University of Wisconsin Hospital and Clinic

February 24, 2014 - March 3, 2014 

Ambassador Program

Help CCF in spreading awareness, advocating in your community and giving support to new families. For more information, contact Gina Peattie. 

Youth Connect Blog

CCF's Youth Connect Facebook group features weekly blog entries by our youth members. This is a private Facebook group page only open to youths (ages 12-25).

Join CCF's Youth Connect