Pediatric Cardiomyopathy Recognized in FY 2020 Senate Appropriations Bill
 
The Children’s Cardiomyopathy Foundation continues to advocate for pediatric cardiomyopathy representation at the federal level through various legislative measures. The Senate HHS appropriations bill was introduced September 2019, and the bill report includes CCF’s recommended language on pediatric cardiomyopathy. The report language specifically requests that the Centers for Disease Control and Prevention (CDC) develop educational materials on the signs, symptoms, and risk factors of pediatric cardiomyopathy. The report also encourages the National Institutes of Health (NIH) to continue to support the Pediatric Cardiomyopathy Registry and additional cardiomyopathy research.
 
Although the Federal budget for the remainder of FY 2020 has not been finalized, this is a notable step forward. The appropriations language opens the door for CCF to work closely with the NIH and CDC on pediatric cardiomyopathy initiatives. This includes incorporating information on pediatric cardiomyopathy into CDC’s existing programs within the Division of Heart Disease and Stroke Prevention, the Division of Reproductive Health, the National Center for Birth Defects and Developmental Disabilities, and the Division of Population Health. Additionally, CCF will request that the National Heart, Lung, and Blood Institute (NHLBI) fund the expansion of the North America Pediatric Cardiomyopathy Registry.
 
New Jersey Senators Bob Menendez and Cory Booker were instrumental in adding cardiomyopathy specific language into the Senate appropriations bill. The Foundation continues to work with the Senators and other Members of Congress to secure funding for cardiomyopathy research through the Department of Defense medical research program, and on the introduction of other legislative measures advocating for cardiomyopathy surveillance and research.
CCF Family Care Bags Distributed at 15 CCF Cardiomyopathy Centers of Care 

Fifteen CCF Cardiomyopathy Centers of Care from across the U.S. are now distributing CCF’s Family Care Bags to their pediatric cardiomyopathy patients. To date, 240 bags have been distributed to families whose diagnosed children are hospitalized for treatment. The program was developed to provide resources, comfort, and support to parents and caregivers.  

CCF parent volunteers from California, Illinois, Indiana, Maryland, Massachusetts, Michigan, Missouri, New York, Ohio, Pennsylvania, and Texas serve as Volunteer Coordinators, making arrangements with the hospital, assembling the bags, and adding letters of encouragement and other useful items. Each care bag contains CCF support materials, a stress ball, a notepad and pen, a refillable water bottle, a Team CCF pillowcase, and additional items collected by each Volunteer Coordinator.
 
CCF’s hospital care bag program was launched in 2017 at five hospitals and then expanded to 11 additional hospitals with funding from Global Genes. Participating centers include Children’s Hospital of Philadelphia, Morgan Stanley Children’s Hospital, Riley Children’s Hospital, Rady Children’s Hospital, Children’s Hospital at Montefiore, Texas Children’s Hospital, St. Louis Children’s Hospital, Children’s Medical Center of Dallas, Lurie Children’s Hospital of Chicago, Boston Children’s Hospital, C.S. Mott Children’s Hospital, Johns Hopkins Children’s Center, Children’s Hospital Los Angeles, Cincinnati Children’s Hospital, Lucile Packard Children’s Hospital, and Mattel Children’s Hospital at UCLA. Plans are underway to expand the program to new centers and reach more families. 
CCF Selected as Beneficiary in ICAP 27th Global Charity Day Event 

ICAP, a global brokerage firm with headquarters in London, UK, kicked off its 27th Charity Day event on December 10. The Children’s Cardiomyopathy Foundation (CCF) was selected as one of 45 U.S. charities to benefit from this year’s fundraising event. This marks the second year that CCF was included in ICAP’s global charity day event.

Each year, ICAP offices around the world donate the revenues and commissions generated on one day of trading to various charities. This year, more than $6 million was raised to support charitable causes in the area of education and training, disadvantaged children and families, health and disability, environmental issues, and animal welfare. Celebrities such as Oscar-nominated actor Bradley Cooper, sports star Alex Rodriguez, and model Lily Aldridge joined ICAP brokers in New York City to close deals and raise more money.
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