The National Alliance for Youth Sports (NAYS) joins the Children's Cardiomyopathy Foundation (CCF) roster of 13 national organizations supporting Children's Cardiomyopathy Awareness Month in September. The month-long initiative features 30 days of fun and educational activities to increase awareness of the signs, symptoms and risk factors for cardiomyopathy and encourage families to start a conversation about their cardiac health history.

The National Alliance for Youth Sports (NAYS) will publish a two-part series on cardiomyopathy on Sporting Kids Live, a site for parents and coaches featuring stories on athletic safety and wellness. Other partners, including the American Academy of Pediatrics, National Organization for Rare Disorders, and Centers for Disease Control and Prevention, will highlight Awareness Month on their blogs, newsletters and social media sites. A webinar, An Overview of Pediatric Cardiomyopathy, is being offered on September 22 in partnership with the National Association of School Nurses.

To commemorate Awareness Month, the Second Annual Walk for a Cure, will be held on September 18 in West Orange, New Jersey. CCF Heartkid Lena Gonzalez will serve as Walk Ambassador. Lena was diagnosed with left ventricular non-compaction cardiomyopathy (LVNC) after suffering a sudden cardiac arrest at 3 months old. The family day, sponsored in part by Novartis, will include a 1.7 mile walk around the reservoir, music, arts and crafts, and other fun activities. 

Findings from two CCF-funded studies were published in two peer-reviewed cardiology journals, and one CCF-funded study will be presented at the upcoming American Heart Association Scientific Session in November.

" Electrocardiography Screening for Hypertrophic Cardiomyopathy " authored by Campbell M, Zhou X and Czosek RJ et al. and " Developmental SHP2 Dysfunction Underlies Cardiac Hypertrophy in Noonan Syndrome with Multiple Lentigines " by Lauriol J, Cabrera JR and Kontaridis MI et al. were published in the June issues of Clinical Electrophysiology and Journal of Clinical Investigation respectively.  

 

"Spectrum of Gene Mutations in Pediatric Hypertrophic Cardiomyopathy" by Barach PR, Cox GF, Lipshultz SE et al. will be on display at the science and technology hall as part of the Heart Failure: Type of Heart Disease Abstract Poster Session on Tuesday November 15 at the American Heart Association Scientific Session. Only 10 percent of study submissions to the AHA are accepted for presentation at their annual meeting.

The 14th Annual CCF Golf Classic, held on July 18, was a great success with 200 attendees and 55 sponsors. Held at the historic Montclair Golf Club in New Jersey, the event raised more than $325,000 for pediatric cardiomyo-
pathy research and education. 

In the evening, golfers enjoyed a lively cocktail hour with a silent auction and jazz provided by Scott Adamchek, a high school student who developed his musical interests after he was diagnosed with hypertrophic cardiomyopathy. During dinner, golf prizes were awarded, and Lindsay Davis, former Miss Ohio, spoke about her experience with cardiomyopathy.  Read more

CCF has launched a new online community, CCF Connect, to engage more members and offer additional family resources. The private online community, which will replace the existing Google email forum.

The new site will enable members to engage in discussions on pediatric cardiomyopathy and participate in "Meet the Expert" Q&A sessions. Members will also be able to view CCF's activity calendar and research study recruitments, as well as access informative fact sheets, Q&A transcripts, medical center profiles, heart camp listings, and other family support resources. The community site will have downloadable community outreach and fundraising documents for those interested in planning an awareness event.

The new online community is open to diagnosed individuals, family members, medical and healthcare professionals and those interested in learning more about pediatric cardiomyopathy