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HEART TO HEART
News from the Children's Cardiomyopathy Foundation
December 2013 | Issue 2

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 Provides Financial Assistance to Single Mom with Two-Time Heart Transplant Recipient Daughter

 

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

CCF Awards $75,000 Toward Pediatric Cardiomyopathy Registry Genetic Study

CCF has awarded an additional $75,000 to the  Pediatric Cardiomyopathy Registry (PCMR) to assist with patient recruitment for a multi-center study, Genotype-Phenotype Associations in Pediatric Cardiomyopathy.

 

The national study, involving 11 medical centers, will genetically profile pediatric cardiomyopathy patients to identify genetic variations that affect the development and progression of cardiomyopathy. To date, CCF has allocated $150,000 to this PCMR study to supplement funding provided by the National Heart, Lung and Blood Institute. Tissue and blood samples from the Pediatric Cardiomyopathy Repository that CCF helped established in 2005 will be utilized for the study.

 

The study aims to understand the relationship of genetic causes to clinical course to help physicians identify patients who are at higher risk for poor outcomes. The goal is to enroll 700 children under the age of 18 with cardiomyopathy plus family members to understand why some gene positive family members do not present with disease symptoms while others with the same mutation do.  

 

Read more

CCF Unites with Rep. Frank Pallone and NJ Assemblyman Patrick Diegnan to Safeguard Students From Sudden Cardiac Arrest

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 

NIH Launches Registry for Sudden Cardiac Arrest in Young 


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 

CCF-Funded Research Articles Among Most Read in Top Cardiology Journal


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 

In This Issue
Holiday Appeal


Give to Our Holiday Appeal
 

Behind Noelle's bright smile and magnetic personality, she is battling cardiomyopathy. Kids like her face multiple challenges - a lifetime of medication, restrictions in sports and uncertainty about their disease. 

Please make a year-end gift and help us to search for better treatments that can improve the quality of life for children with this chronic heart disease.

 Give Today 

Making a Difference


Get Inspired: Family Fundraisers
 
From coast to coast, cardiomyopathy families are supporting CCF with creative fundraisers ranging from bake sales and t-shirt sales to casino nights and even a dunking for dollars challenge. See what others are doing and get inspired to create your own event! If you have an idea, contact Sheila Gibbons.

 

Read more & view photos

Advocacy Alert  
Take Action and Be Heard!

 

We continue to advocate in Washington D.C. to raise awareness of cardiomyopathy and to enact legislation that will protect affected children from sudden cardiac death. We need you to raise your voice to persuade more members of Congress to support cardiomyopathy related legislation. You can be heard by sending emails to your senators and representatives and telling them how important these bills are to you. 

  

Upcoming & Ongoing CCF Events

 

6th Annual All-In for A Cure

No-Limit Texas Hold' Em Tournament

Feb 12, 2014

Providence, New York City  

 

Details

 

Heart Jewelry Sale

Looking for a perfect gift for the Heart Mom in your life? Jennifer Engel Designs created the Nolan's Heart Of Steel Collection, in honor of little Nolan Everett McLaughlin who is battling dilated cardiomyopathy. 

 

Shop Amazon and Support CCF

Help CCF while you shop this holiday season! Visit Amazon's new charitable portal, select CCF as your charity, and we will receive 0.5% of the purchase.



Hoodies for Hearts

Help raise awareness of pediatric cardiomyopathy and funds for CCF by purchasing a hoody sweatshirt by January 7, 2014.  Fundraiser is hosted by Khloe Madison (age 12, HCM) and family. 

Family Messageboard
CCF Connect:  Upcoming Cyberguests

 

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 


Meet Noelle, Gavin and Nolan -- the three adorable CCF Heart Kids featured in our annual appeal. Noelle loves playing doctor with her Mickey and Minnie dolls, Gavin gets more excited over sushi than ice cream, and Nolan is the Pittsburgh Steelers' youngest fan. Please give to our 2013 Holiday Appeal so that we can continue helping kids diagnosed today and those diagnosed tomorrow.

  

Meet Other CCF Heart Kids 

 

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