CCF’S Advocacy Efforts

The Children’s Cardiomyopathy Foundation (CCF) focuses on bipartisan recognition and support of CCF’s advocacy and public policy agenda on Capital Hill and actively establishes relationships with federal agencies, congressional leaders and the health advocacy community to support legislation that protects and assists children with cardiomyopathy and their families. As part of its advocacy efforts, CCF is building a strong national network of advocates who are dedicated to increasing awareness of pediatric cardiomyopathy and issues of importance to the cardiomyopathy community. Current Public Policy Agenda

Yearly Highlights

2018
  • Secured cardiomyopathy's inclusion in the Department of Defense's Peer Review Medical Research Program (PRMRP) list of fundable research topics. The Senate Appropriations Committee appropriated $330 million in FY 2019 to support biomedical research within the PRMRP, which includes cardiomyopathy research.
  • Worked with the Congressionally-Directed Medical Research Program (CDRMP) staff to include four Children's Cardiomyopathy Foundation nominated representatives as consumer reviewers on cardiomyopathy proposals under the PRMRP grant program.
  • Hosted the fourth annual AED Hunt on the Hill with Congressman Phil Roe as sponsor to raise awareness of cardiomyopathy and sudden cardiac arrest among congressional members and staffers.
  • Secured Congressional Record Statements from five members of Congress during Children's Cardiomyopathy Awareness Month. Representatives included Tom Cole (R-OK), John Duncan (R-TN), Bill Keating (D-MA), Frank Pallone (D-NJ), and Phil Roe (R-TN).
2017
  • Added cardiomyopathy as a fundable research topic to the Department of Defense Peer Review Medical Research Program (PRMRP). The Senate Appropriations Committee appropriated $300 million in FY 2018 to support biomedical research within the PRMRP.
  • Secured the reintroduction of the Cardiomyopathy Health Education, Awareness, Research, and Training in the Schools (HEARTS) Act (H.R. 3880). The legislation, supported by 26 national organizations, assesses the research needs of cardiomyopathy across the lifespan, establishes cardiomyopathy surveillance research, and creates educational resources to disseminate to school administrators, educators, and families.
  • Secured 26 organizational co-signers for the Advocating Education on Defibrillation in our Schools (AEDs) Resolution (H.Res. 35) to highlight the importance of AED training in being prepared for a cardiac emergency.
  • Secured a floor speech from Congressman John Duncan (R-TN) and three statements for the Congressional Record from Representatives Brenda Lawrence (D-MI), Bonnie Watson-Coleman (D-NJ), and Bill Pascrell, Jr. (D-NJ), in recognition of Children's Cardiomyopathy Awareness Month in September.
2016
  • Pediatric cardiomyopathy and specifically the Childrenís Cardiomyopathy Foundation was mentioned in the Presidentís FY 2017 budget in response to the Foundationís FY 2016 appropriations language request.
  • Supported the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments) Act (H.R. 971/S 1421), 21st Century Cures Act (H.R. 34), and reauthorization of the Rare Pediatric Disease Priority Review Voucher Program.
2015
  • Secured report language on cardiomyopathy in the Fiscal Year 2016 Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education bill that requires the National Institutes of Health to make public through the Research, Condition, and Disease Categorization database the annual amount of federal funding invested in pediatric cardiomyopathy. Language was also included that encourages the Centers of Disease Control and Prevention to increase awareness of pediatric cardiomyopathy and report to Congress related activities in the President's FY 2017 budget.
  • Strengthened partnership with the Centers for Disease Control and Prevention (CDC) through various initiatives, including supporting the Children’s Cardiomyopathy Awareness Month as a national partner and developing a CDC webpage highlighting cardiomyopathy.
  • Secured the reintroduction of the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools (HEARTS) Act in the U.S. House of Representatives and the Supporting Athletes, Families and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act in the U.S. House of Representatives and the Senate.
  • Included cardiomyopathy specific language in the Every Child Achieves Act of 2015 (S. 1177), which encourages local educational agencies to use Title IV ESEA state funding towards activities and programs that address cardiac conditions such as cardiomyopathy.
  • Passed state resolution (HJ888) in the Virginia House and Senate during National Heart Month in February commending the Children's Cardiomyopathy Foundation for its advocacy and education initiatives.
  • Passed state resolution (H409) in the Pennsylvania House of Delegates recognizing the month of September as Children's Cardiomyopathy Awareness Month in Pennsylvania.
2014
  • Launched inaugural Children’s Cardiomyopathy Awareness Month in September with the support of 13 national partners, including the American Academy of Pediatrics, American College of Cardiology and American Heart Association.
  • Organized a Capital Hill awareness campaign, AED Hunt on the Hill, with bipartisan support. Also secured a floor speech and Congressional Record Statement to highlight the importance of Children’s Cardiomyopathy Awareness Month.
  • Organized Day of Action on the Hill for CCF family members to meet with Senators and Representative from their home states to ask them to support CCF’s legislative agenda.
  • Worked with the Centers for Disease Control and Prevention (CDC) to have cardiomyopathy listed on the CDC’s A-Z disease index. Also worked with the CDC’s Division of Heart Disease and Stroke Prevention to create a dedicated web page on cardiomyopathy.
  • Secured bipartisan support for the introduction of Senate Resolution 372 on Secondary School Student Athletes’ Bill of Rights encouraging schools to adopt best practices and standards to prevent and address student athletic injuries and sudden cardiac arrest.
  • Took a leadership role in drafting and securing the introduction of the Supporting Athletes, Families and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act in the U.S. House of Representatives and the Senate by Senator Robert Menendez (NJ) and Representatives Bill Pascrell (NJ-9) and Lois Capps (CA-24). The bill is the most comprehensive federal legislation on youth sports safe and encourages the development of best practices to prevent, document, and address youth athlete cardiac emergencies and injuries. Secured 15 House cosponsors as of May 2015.
  • Garnered the support of 29 legislative cosponsors and 37 stakeholder organizations for the Cardiomyopathy Health, Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act.
  • Secured report language on cardiomyopathy in the Senate FY 2015 Labor, Health and Human Services subcommittee appropriations bill that encourages the National Heart, Lung, and Blood Institute to develop and disseminate a pediatric cardiomyopathy strategic plan and the Centers for Disease Control and Prevention (CDC) to incorporate cardiomyopathy into existing CDC activities.
  • Worked closely with Representative Lois Capps (CA-24) to reintroduce the Teaching Children To Save Lives Act, legislation that provides schools with resources to teach students cardiopulmonary resuscitation (CPR) and how to use an automated external defibrillator (AED).
  • Initiated a grassroots advocacy campaign to support the Cardiomyopathy HEARTS Act, SAFE PLAY Act, and Teaching Children to Save Lives Act, which generated more than 223 letters to lawmakers.
  • Partnered with the American Camp Association on Second Annual AED Camp Scavenger Hunt.
2013
  • Secured reintroduction of the Cardiomyopathy Health, Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act during National Heart Month by Senators Robert Menendez (NJ) and Frank Lautenberg (NJ) and Representative Frank Pallone (NJ-6).
  • Secured report language on cardiomyopathy in the Senate FY2014 Labor, Health and Human Services subcommittee appropriations bill and in the final passed bill that encourages the National Heart, Lung, and Blood Institute to develop a pediatric cardiomyopathy research agenda and the Centers for Disease Control and Prevention to continue to track the rates of sudden cardiac arrest (SCA), develop prevention strategies and disseminate information on SCA to the public.
  • Secured written commitment to Congress from the National Heart, Lung, and Blood Institute (NHLBI) in the FY 2014 President’s budget to work with the Children’s Cardiomyopathy Foundation to increase federal investment in cardiomyopathy and develop a research agenda focused on pediatric cardiomyopathy.
  • Supported Representative Lois Capps (CA-24) reintroduction of the Teaching Children To Save Lives Act, legislation that would provide schools with resources to teach students cardiopulmonary resuscitation (CPR) and how to use an automated external defibrillator (AED).
  • Initiated grassroots advocacy campaign to support the Cardiomyopathy HEARTS Act and Teaching Children to Save Lives Act, which generated letters from 28 states to lawmakers.
  • Worked with the National Heart, Lung, and Blood Institute, Centers for Disease Control and congressional leaders to establish a Sudden Death in the Young Registry. The national registry will collect population-based information on sudden unexpected death in youths up to age 24.
  • Launched a national AED camp scavenger hunt to highlight cardiomyopathy as the leading cause of sudden cardiac arrest in the young and the importance of AED accessibility in saving lives.
2012
  • Secured the introduction of the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act (S. 2124) in the Senate by Senators Frank R. Lautenberg (NJ) and Robert Menendez (NJ) during National Heart Month in February.
  • Launched grassroots initiative to gain support for the Cardiomyopathy HEARTS Act, which resulted in more than 874 letters to lawmakers in 37 states.
  • Secured report language on cardiomyopathy in the Senate FY2013 Labor, Health and Human Services subcommittee appropriations bill and in the final passed bill that urges the National Heart, Lung and Blood Institute to maintain support of the Pediatric Cardiomyopathy Registry and Specimen Repository, establish a pediatric cardiomyopathy task force, and the Centers for Disease Control and Prevention to develop an educational awareness program on cardiomyopathy and sudden cardiac arrest.
  • Participated in the Sudden Cardiac Arrest Coalition strategic planning process.
  • Presented testimony to the New Jersey Senate Health and Human Services and Senior Citizens Committee to support bill S.1911, the Children’s Sudden Cardiac Events Reporting Act.
2011
  • Developed a two-year government relations strategic plan and public policy and advocacy agenda following a comprehensive public policy audit, environmental scan and needs assessment.
  • Worked closely with Congressman Frank Pallone (NJ-6) to introduce the first cardiomyopathy legislation, the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act (H.R. 3625) to increase awareness of pediatric cardiomyopathy and the risk of sudden cardiac arrest among parents, schools and health professionals.
  • As a steering committee member of the Sudden Cardiac Arrest Coalition, worked in cooperation with the Congressional Heart & Stroke Caucus to host the Take a Stand Against Sudden Cardiac Arrest briefing on Capital Hill.
2010
  • Steering committee member for the newly formed Sudden Cardiac Arrest Coalition, an advocacy group of 40 cardiac organizations focused on raising awareness of sudden cardiac arrest.
  • Organized a briefing at Capitol Hill to commemorate Sudden Cardiac Arrest Month and educate congressional members on the importance of cardiopulmonary resuscitation (CPR) and automatic external defibrillators (AED) in saving lives.
  • Participated in the “Cure the Process” campaign, focused on creating new science-driven public policy that will improve the Food and Drug Administration (FDA) regulatory process related to the development of rare disease therapies.

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