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News from the Children's Cardiomyopathy Foundation
September 2015 | Issue 3

Children's Cardiomyopathy Awareness Month and Walk For A Cure Set for September 
Initiative Urges Families to #KnowYourHeart and Learn Risk Factors
Twelve n ational or ganizations are joinin g CCF this September in raising awarene ss of pediatric cardiomyopa thy. The Children's Cardiomyopathy Awareness Month was launched last year to educate the public about the signs, symptoms and risk factors for cardiomyopathy and to encourage families to learn about their cardiac health history.
CCF is celebrating the month with 30 days of activities, which include circulating facts on the disease, sharing stories about cardiomyopathy families, planning community events, and generating media coverage.  Awareness month partners include the  American Academy of Pediatrics , American College of Cardiology American Heart Association , Centers for Disease Control and Prevention ,   National Association of School Nurses National Athletic Trainers' Association , National Organization for Rare Disorders Parent Heart Watch , Sarcomeric Human Cardiomyopathy Registry (ShaRe) School-Based Health Alliance The Society of Thoracic Surgeons , and  Sudden Cardiac Arrest Foundation.
This year CCF is adding a Walk for a Cure to bring the message to more communities. 21 walk teams have registered in New Jersey and across the country. Walk for a Cure will take place on September 27 in West Orange, N.J., and the family day will include music, activities and food. Gianna and Sophia Olup, two sisters diagnosed with left ventricular non-compaction cardiomyopathy, will serve as Walk ambassadors at the ceremonial ribbon cutting. 

AED Hunt on the Hill with Rep. Capps
CCF is working with Representative Lois Capps (CA-26) to host the second annual AED Hunt on the Hill during Children's Cardiomyopathy Awareness Month, The event, to be held on September 17 in the Capitol complex, will invite members of Congress and congressional staff members to learn about the importance of emergency preparedness and early defibrillation in an adverse cardiac event. 
The AED Hunt on the Hill follows the success of CCF's #MyCampAED scavenger hunt, which ran all summer long in partnership with the American Camp Association and One Beat CPR + AED.
Findings Published from CCF-Funded
Pediatric Cardiomyopathy Registry Studies  

New findings from CCF-funded Pediatric Cardiomyopathy Registry studies have been published in two peer-reviewed cardiology journals. "Cardiomyopathy Phenotypes and Outcomes for Children with Left Ventricular Myocardial Non-Compaction: Results from the Pediatric Cardiomyopathy Registry" and "Prevalence, Predictors, and Outcomes of Cardiorenal Syndrome in Children with Dilated Cardiomyopathy" were published in the July issues of the Journal of Cardiac Failure and Pediatric Nephrology respectively.
The first study reviewed clinical data from children with left ventricular non-compaction cardiomyopathy to determine the risk of death and transplant among different phenotypic groups. The results will help guide treatment plans and inform cardiologists on when patients should be listed for transplantation based on certain clinical indicators.
The second study looked at the risk factors for cardiorenal syndrome in children diagnosed with dilated cardiomyopathy (DCM). The study found that children with DCM, especially those with impaired left ventricular function, should be monitored for renal disease. This sub-group also may be associated with higher mortality. 

CCF Founder Named Associate Editor of
Progress in Pediatric Cardiology

CCF Founding Executive Director, Lisa Yue, has been been named as an associate editor for advocacy and family support of Progress in Pediatric Cardiology, an international peer-reviewed journal of scientific research, reviews and experienced opinion important to the understanding and management of cardiovascular diseases in children. 
"I appreciate that the journal recognizes the importance of family support and advocacy in the overall management of patients with cardiac disease," said, Lisa. "I look forward to working with the editorial board to promote the journal as a leading cardiology journal."
As a member of the editorial board, Lisa will guest edit special journal issues, help develop a team of ad-hoc guest editors and peer reviewers, assist with commissioning of reviews and commentaries, and encourage submission of original articles. 
Cardiac Safety Language Included in Every Child Achieves Act  
CCF partnered with Senator Robert Menendez to include cardiomyopathy specific language in the Every Child Achieves Act of 2015 (S. 1177). The bill, which passed the Senate in July, is a bipartisan educational policy reform bill that would replace the No Child Left Behind Act of 2001. The bill would end the federal government's mandate on national school standards and let states develop their own accountability systems.

If passed into law, the bill would allow states to use federal funds for a series of activities that include disseminating materials on cardiac conditions such as cardiomyopathy and developing emergency action plans for student athletes. 
The language secured in the bill complements the Supporting Athletes, Families, and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act, which CCF helped reintroduce in the House and Senate earlier this year. The SAFE PLAY Act includes provisions to protect student athletes from sudden cardiac arrest which can occur with children at-risk of cardiomyopathy.
CCF Holds 13th Annual Golf Classic 
Tri-state Event Raises Awareness and Funds for Pediatric Cardiomyopathy Research and Education

The 13th Annual CCF Golf Classic, held on July 20, was a sold-out success with 224 attendees and 64 sponsors. Held at the historic Montclair Golf Club in New Jersey, the event raised more than $370,000 for pediatric cardiomyopathy research and education.  Read more

View event photos
CCF Co-Sponsors Cardiomyopathy Family Conference 

CCF is sponsoring a second family conference with the Sarcomeric Human Cardiomyopathy Registry (SHaRe) in Ann Arbor, Mich. Affairs of the Heart: Living with Genetic Cardiomyopathy will take place October 3 and is offered free of charge to patients and families. CCF sponsored the first SHaRe family conference in November 2014 at Brigham & Women's Hospital in Boston, Mass.
The meeting will consist of presentations and breakout sessions led by top cardiomyopathy researchers and clinicians from University of Michigan Health System and Detroit Medical Center.

In This Issue
Make a Difference

On September 27, families across the U.S. will unite to raise awareness of pediatric cardiomyopathy.

Join Team CCF and make a difference in your community. Come walk with us in New Jersey, plan a walk in your hometown, or support CCF as a virtual walker.  #ItTakesATeam

  Register for walk
Advocacy Alert

Take Action and Be Heard!


Raise awareness of cardiomyopathy and support legislation that will protect at-risk children from sudden cardiac death. We need your help to persuade more members of Congress to support cardiomyopathy related legislation. You can email your senators and representative to tell them how important this issue is to you.


Help CCF Win Award

CCF has been named a top-rated health organization for four consecutive years by leading charity evaluator Great Nonprofits.
We need your help to get top-rated for 2015! Simply select "Children's Cardiomyopathy Foundation" at Great Nonprofits and write a positive review about CCF so we can receive this award again. 


Submit a review
CCF Events
Big Hearts Fill Our Soles Walk
September 13
Highland, Ind.
Come walk with family and friends in Indiana during Awareness Month in honor of Gianna Knight who is living with HCM. 

Trivia Night
October 23
O'Fallon, Mo.
It will be a battle of great minds as CCF member Jennifer Vinyard hosts this community event in honor of her 13-year-old daughter, Sara, who has HCM. 

Chad's Race for a Cure
October 24
New York, N.Y.
Chad was diagnosed with HCM and  had a defibrillator and pacemaker implanted as a result. Under his physicians' guidance, Chad will participate in New York's Urbanathlon, a 10-mile obstacle course, to raise funds for CCF.

Shop Amazon and Support CCF
Need back to school items or Halloween costumes?. Support CCF by using AmazonSmile to make all your online purchases. Visit Amazon's charitable portal, select "Childrens Cardiomyopathy Foundation" and CCF will receive 0.5% of your total purchase.
Family Messageboard
Participate in Quality of Life Study
CCF is funding a research study to learn how to improve the quality of life for children with cardiomyopathy and their families. We invite children ages 8-18 and their parents or caregivers to complete a short online survey about the impact of cardiomyopathy on different aspects of their daily life.

Preparing for Transplant Webinar
Joseph Rossano, MD
Children's Hospital of Philadelphia
Philadelphia, Penn.
September 15 at 6pm EST

Register for webinar

Webinar Recordings Online
Recordings are available online for past webinar sessions. 

Back to School Resource Kit
CCF's school packet, Ensuring a Good Learning Environment - A Cardiomyopathy School Resource Kit, helps to educate school staff about the disease and guide parents in obtaining the appropriate school accommodations and modifications for their child. 

Ambassador Program
Learn how you can help CCF to spread awareness, advocate for change and give support to new cardiomyopathy families.

Youth Heart Buddy Program 
This program connects CCF's pre-teen and teen members while providing support and friendship as they approach adulthood.

Meet Noah

Noah enjoys playing with legos and loves talking about his school day.
Read more
Meet Hana
Hana is a strong, independent child who can be both sweet and sassy. 

Meet Zara

Zara loves sushi and is always sneaking sips of her mom's tea.
Read more

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