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HEART TO HEARTNews from the Children's Cardiomyopathy Foundation
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Welcome to CCF's E-Newsletter!
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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.
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CCF-Funded Research in the News
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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
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Drum Roll: We Have a Winner
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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
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CCF's Golf Classic: A Hole In One
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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
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CCF Collaborates with the Pediatric Heart Transplant Foundation
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New Pediatric Heart Transplant Guide Available
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
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Back-to-School Basics for Cardiomyopathy Families
CCF School Resource Kit Recommended
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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
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Making a Difference
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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
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Advocacy Alert
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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.
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Upcoming & Ongoing CCF Events
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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.
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.
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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
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