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News from the Children's Cardiomyopathy Foundation
March 2016 | Issue 1
CCF Announces 2016 Grant Recipients

CCF awarded $199,552 to four new investigators to study various forms of cardiomyopathy affecting children. Grant awardees include: Juan Alejos, M.D. and Patricia Lester, M.D. of University of California, Los Angeles; Angeliki Asimaki, Ph.D. of Beth Israel Deaconess Medical Center; Bahig M. Shehata, M.D. of Emory University School of Medicine; and Noah Weisleder, Ph.D. of Ohio State University.

Selected from more than 39 letters of intent by CCF's medical advisors, the four research studies are focused on improving diagnosis and enhancing treatment, and range from basic science and genetics to clinical and behavior health. The four funded studies are: Integrated Family-Centered Behavioral Health Screening & Preventive Intervention for Pediatric Cardiomyopathy, The Role of GSK3β in the Pathogenesis of Arrhythmogenic Cardiomyopathy, Genetic Analysis to Identify Inheritance Patterns in Histiocytoid Cardiomyopathy, and Targeting Membrane Repair to Treat Pediatric Dilated Cardiomyopathy

Since its inception, CCF's Research Grant Program has funded more than 45 studies on pediatric cardiomyopathy across the U.S. and Canada, which has resulted in over 79 medical articles and conference presentations on the disease.
CCF Founder Publishes in
Peer-Reviewed Journal

An article by CCF founding executive director Lisa Yue, "From Partnership to Progress in the Field of Pediatric Cardiomyopathy," has been published in Progress in Pediatric Cardiology, an international peer-reviewed journal of scientific research, reviews and experienced opinion. The article gives an overview of the progress in research, education and patient support related to pediatric cardiomyopathy in the past decade and highlights CCF's role in advancing medical care, increasing public awareness, and broadening representation in the public health and legislative arena. The article is now published online, and the printed version will be available in March as part of a special issue focused on pediatric cardiomyopathy. 
CCF and Kyle John Rymiszewski Research Scholar Named

Recognizing the need to foster the next generation of researchers in the field, CCF joined forces with the Kyle John Rymiszewski Foundation to establish a pediatric cardiomyopathy research scholar program. Paul Barach, M.D., MPH. has been named the 2016 cardiomyopathy research scholar and will be starting his new position in March. This will be in addition to his role as a clinical professor at Wayne State University School of Medicine.
The scholarship is funded in part by the Kyle John Rymiszewski Foundation to honor Kyle Rymiszewski, a Michigan teenager who died from hypertrophic cardiomyopathy. "I'm excited Dr. Barach will be the first recipient of this scholarship in Kyle's memory. He will bring a new perspective to the PCMR research team and can spearhead more qualitative studies on the disease," said Kyle's mom, Aimée Cowher.
Dr. Barach is a Harvard-trained cardiac anesthesiologist and intensive care expert with formal training as a health services researcher. He was formerly the associate professor at University of Miami and medical director of quality and safety at Jackson Memorial Hospital in Miami. Dr. Barach has edited several medical textbooks and published over 400 medical articles.
Dr. Barach will work with Drs. Jay Wilkinson and Steve Lipshultz at the Pediatric Cardiomyopathy Registry Administrative Coordinating Center located at the Children's Research Center of Michigan. Dr. Barach will collaboratively design and conduct research on pediatric cardiomyopathy.
CCF's Night for a Cure Sets Stage for National Heart Month

More than 220 guests and 42  corporate sponsors united for CCF's Night for a Cure to celebrate National Heart Month. The event, held on February 10 at the Edison Ballroom in New York City, raised more than $202,000 for pediatric cardiomyopathy research and education.

Last year's winner, Betsy Lucas, played her way to the final table, but was beat out by Michael Huthwaite from RW Baird who took home the grand prize, a $10,000 entry to the 2016 World Series of Poker Main Event in Las Vegas.
Advocacy: CCF and Cardiomyopathy Mentioned in President's 2017 Budget

The President's FY 2017 Budget was released in February and specifically mentions cardiomyopathy and the Children's Cardiomyopathy Foundation. This was the result of CCFs advocacy efforts in Washington D.C. to ask the National Institutes of Health and the Centers for Disease Control and Prevention (CDC) to direct more resources to the disease.
In the report, the CDC states specific activities they have engaged in to address pediatric cardiomyopathy, including partnering with CCF during Children's Cardiomyopathy Awareness Month, establishing a Sudden Death in the Young registry to capture sudden deaths due to cardiomyopathy, and developing a dedicated webpage highlighting trends in cardiomyopathy rates among children.

Cardiomyopathy Family Conference Held at Stanford

CCF co-sponsored the third SHaRe  family conference, Affairs of the Heart: Living with Inherited Cardiomyo-pathy, in Stanford, Calif. More than 200 families attended and heard CCF board member, Raymond Yue, speak about CCF's patient support and advocacy work. The F e bruary 20 meeting was a collaboration with the Stanford Center for Inherited Cardiovascular Disease and the MyoKardia-sponsored SHaRe. The conference featured physicians from Stanfor d University with an expertise in hypertrophic cardiomyopathy and dilated cardiomyopathy. 
Emergency Wallet Cards 

CCF partnered with the New York Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) to develop an emergency card for pediatric cardiomyopathy patients. These cards can be printed, filled out and carried by the patient in a wallet or backpack in case of a cardiac emergency.
In This Issue
Spring Appeal

The financial burden cardiomyopathy places on families can be as difficult as the emotional strain following diagnosis. Give to CCF's Financial Assistance Program  so we can continue to help families be in the best position to care for their sick child. A little can go a long way for a family facing financial hardships. 
Make a Difference

Raising awareness doesn't have to stop with Heart Month. You can make a sweet difference throughout the year by organizing a bake sale in your community.  Contact 
CCF's event team today  to receive your complimentary Bake for a Cure fundraising kit.
Advocacy Alert

Take Action and Be Heard!


CCF continues to advocate in Washington D.C. and enact legislation to protect at-risk children from sudden cardiac death. We need your help persuading more members of Congress to support the below

cardiomyopathy-related legislation. Send an email to your U.S. senators and representative telling them how important this bill is to you.


CCF Fundraisers
Annual Golf for a Cure 
July 18
Montclair Golf Club, N.J.

Join us and tee-off for a cure! The event at this historical golf club sells out quickly so reserve your playing spot and sponsorship package early.

New Jersey Tricky Tray
May 11
Paramus, N.J.

The Twins' Mothers of Bergen County will host their 56 th
annual charity event to benefit CCF. Open to the public, it is one of the largest tricky tray events in Northern New Jersey. 

NJ High School Film Festival
May 19  
Cresskill, N.J.

The Film Festival is donating the proceeds of their screening night to CCF. Tri-state area high school students can submit their video and film works from March 1-April 29.

Family Messageboard
Coping with Loss Webinar
April 5 at 6pm EST
Donna Schuurman, M.D.
Dougy Center for Grieving Children & Families

Brigham and Women's Hospital in Boston, Mass., continues to recruit eligible participants for their VANISH clinical study to test whether an FDA-approved drug can be used to slow the progression of HCM.
Family Gathering Planning Guide
This new resource provides instructions and resources in planning a local CCF family gathering. If you are interested in hosting a gathering, please reach out to Gina Peattie .
Family Assistance Program
Qualifying families can apply for aid on cardiomyopathy-related medical and non-medical expenses. To be considered for financial assistance, contact Gina Peattie.

Meet Malea

Malea makes her own music videos and is One Direction's biggest fan.

Meet Harper

Harper loves bubbles, her big brother, and playing at the beach in the sun.

Meet Lucy

Lucy's favorite song was Let Me Call You Sweetheart and she loved Elmo and stacking toys. 
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