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HEART TO HEART
News from the Children's Cardiomyopathy Foundation
October 2013 | Issue 1
Welcome to CCF's E-Newsletter!
New Online Format

Welcome to CCF's first quarterly electronic newsletter. This new way of communication allows us to get the latest news on cardiomyopathy and the Foundation to you quicker and in a more easy-to read-format.  We hope you like our first issue, and as always, we welcome your comments and feedback. To send us an email click here.

CCF-Funded Research in the News

Lisa Yue's Loss Inspires Research Study that Identifies Risk Factors of Death and Heart Transplant in Children with Cardiomyopathy



The Children's Cardiomyopathy Foundation (CCF), National Heart, Lung, and Blood Institute (NHLBI), and U.S. and Canadian medical centers have collaborated on a national study with findings that can save the lives of infants and children diagnosed with hypertrophic cardiomyopathy (HCM). This study represents more than a decade-long search for answers for CCF's Founding Executive Director, Lisa Yue, after losing her two young sons to HCM.

 

The Lancet, a leading peer-reviewed medical journal, published the results of this North American study in September. The paper, "Risk Stratification at diagnosis for children with hypertrophic cardiomyopathy: an analysis of data from the Pediatric Cardiomyopathy Registry," outlines risk factors that cardiologists can use to determine which HCM-diagnosed children are at greatest risk of death and who should be evaluated for earlier heart transplant. Read more

This story was covered by several media outlets, including ABC News, The Miami Herald and Fox News Network

 

To review the latest publications and presentations from other CCF-funded research studies, click here.

Drum Roll: We Have a Winner 

CCF Announces Winner to Summer Long  #mycampAED Scavenger Hunt

 

In celebration of Sudden Cardiac Awareness Month, the Children's Cardiomyopathy Foundation (CCF) and One Beat CPR + AED awarded Eisenhower High School Marching Band in Shelby Township, Mich., a new automated external defibrillator (AED) for winning the summer long #mycampaed scavenger hunt.

 

More than a dozen camps entered the scavenger hunt, including the Chicago Bears summer training camp, highlighting the importance of not only having AEDs at all camps, but also of campers and counselors knowing their location and how to use it. 

 

Campers and camp staff at both residential and day camps were encouraged to join the national hunt by taking a photo of their camp AED and posting online with #mycampAED. Notable participants included Charles Tillman, cornerback for the Chicago Bears, and Dave Masur, coach of the nationally ranked St. John's University men's soccer team and director of the Montclair State University soccer camp in New Jersey. Read more 

 

Read press coverage 

CCF's Golf Classic: A Hole In One  
Another Successful Event at Montclair Golf Club

The 11th Annual CCF Golf Classic, held on July 22, was a sold-out success with 230 attendees and 60 sponsors supporting the event. Held at the historic Montclair Golf Club in New Jersey, the event raised more than $403,500 for CCF's research and education programs. 

 

The day began with a barbeque lunch followed by a shotgun start on multiple courses. The golf was intense as 53 foursomes competed for the lowest par score on Montclair's challenging greens. Betting holes and contest holes spaced throughout the courses added excitement to the game, and even though there was an unexpected downpour in the afternoon, the rain didn't dampen anyone's spirits. Read more 

 

View event photos 

 

Download event program 

CCF Collaborates with the Pediatric Heart Transplant Foundation 
New Pediatric Heart Transplant Guide Available

New Educational Resource For Pediatric Heart Transplant Patients

CCF and the Pediatric Heart Transplant Foundation (PHTF) have collaborated to develop a new educational resource, Pediatric Heart Transplants: A Guide for Patients and Families. The comprehensive guidebook was developed with the PHTF utilizing the collective experience and knowledge of the top pediatric heart transplant centers in the U.S. and Canada. The guide covers many topics of concern for parents whose child is being considered for a heart transplant, including cardiac assessment, listing, preparation for surgery, recovery, medication and longer term care.

 

The PHTF is part of the Pediatric Heart Transplant Study Group, which is comprised of the 43 heart transplant centers that handle 85 percent of all pediatric heart transplants performed in the U.S. 

 

Download the guide

Back-to-School Basics for Cardiomyopathy Families

CCF School Resource Kit Recommended

For heart parents, ensuring their child performs at their optimal level in school while being protected from an unexpected cardiac event can be challenging. Concerns range from "Are teachers, coaches and the schoolnurse educated on cardiomyopathy," "Will teachers understand my child's need for accommodations or modifications," and "Will the school be prepared in case of a cardiac emergency?" 

 

The Children's Cardiomyopathy Foundation's school education packet, Ensuring a Good Learning Environment - A Cardiomyopathy School Resource Kit is intended both to educate school staff about the disease and to guide parents in working with schools to obtain appropriate accommodations and modifications for their child. The kit includes two guidebooks, a sample school letter and templates for a healthcare plan, 504 education plan and emergency care plan.

 

Request a school resource kit

 

Download school resource kit 

 

 

In This Issue
Making a Difference


Get Inspired: Family Fundraisers
 
From coast to coast, cardiomyopathy families are supporting CCF with creative fundraisers ranging from bake sales and walk-a-thons to themed parties, golf outings and even a dunking for dollars challenge. See what others are doing and get inspired to create your own event! Every dollar raised goes to fund critically needed research and to support the estimated 30,000 kids living with cardiomyopathy. 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, such as the Cardiomyopathy HEARTS Act and the Teaching Children to Save Lives Act. You can help get these bills passed into law by sending emails to your senators and representatives and telling them how important these bills are to you. 

 

Upcoming & Ongoing CCF Events

A Night in Vegas

November 7, 2013

Carmichael's Warehouse, Chicago  

 

Details

 

6th Annual All-In for A Cure

No-Limit Texas Hold' Em Tournament

Feb 12, 2014

Providence, New York City  

 

Details


Halloween Costumes

Order your Halloween costumes at wholesale prices and help CCF at the same time!  Just enter PROMO CODE FUN1713 when purchasing and CCF receives 15 percent of all sales.  


Mabel's Labels

Take care of all your school and home labeling needs while supporting CCF's mission. Tove Maren Stakkestad has arranged for Mabel's Labels to donate 20 percent of all sales in honor of her son Jordan (age 5, DCM).  


Heart Hero Signs

In honor of her son Jordan (age 16 months, HCM), Elizabeth Womack of Cornerstone Woodworking and Crafts is donating $6 to CCF for every "Heart Hero" wooden sign that she sells.  

Family Messageboard
CCF Connect:  Upcoming Cyberguests

Pediatric Heart Transplant - Before, During and After

Yuk Law, MD

Seattle Children's Hospital

November 4-11, 2013

 

Gastrointestinal Issues Relating to Cardiomyopathy

Kazlow , MD

Children's Hospital of New York

Columbia University Medical Center

December 2013 - Dates TBD

 

Youth Heart Buddy Program

CCF's new Heart Buddy Program helps connect pre-teens and teens (ages 12-25) with each other. For more information contact,  Gina Peattie. 

  

Youth Connect Blog

Starting this October, CCF's Youth Connect Facebook group will feature different youth members posting weekly blog entries. This is a private Facebook group page only open to youths (ages 12-25).

 

Join CCF's Youth Connect 

 

 

 

 

CCF's Heart Kids

Meet Matt Neuhaus

Matt Neuhaus, who was on the transplant wait list for 392 days, received his new heart a day before the new school year. Dorie, Matt's mom, says, "It must be the perfect heart because it started beating on its own!" Read more
Meet Joey Middlemiss

6-year-old, Joseph (Joey) Middlemiss, captured our hearts with his big, blue eyes and amazing musical talents on the drums. Sadly he lost his fight with dilated cardiomyopathy in September. 
 Read more


Meet Charlotte Smith
 
Charlotte's favorite toy friends are her dinosaurs. She loves the Land Before Time movies, the color purple and her dance classes. Charlotte was diagnosed with dilated cardiomyopathy at four months old. Read more


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