COALITION AGAINST CHILDHOOD CANCER

CAC2 MARKED ITS 11TH YEAR OF SERVICE TO THE CHILDHOOD CANCER COMMUNITY THIS YEAR. DURING THAT TIME, CHILDHOOD CANCER SURVIVAL RATES HAVE IMPROVED, SUPPORT SERVICES HAVE EXPANDED, AND ADVOCACY EFFORTS HAVE STRENGTHENED. THROUGHOUT ITS 2023-2024 FISCAL YEAR, CAC2 CONTINUED TO DELIVER ON ITS MISSION IN ITS CORE AREAS OF SERVICE TO THE CHILDHOOD CANCER COMMUNITY.ADVOCACY CHILDREN AND ADOLESCENTS WITH CANCER RELY HEAVILY ON INVESTMENT BY THE FEDERAL GOVERNMENT FOR IMPROVED RESEARCH AND CARE. CAC2 MEMBERS HARNESSED THEIR COLLECTIVE VOICES IN SUPPORT OF FOUR SIGN-ON OPPORTUNITIES THIS YEAR: (1) H.R. 4758, ACCELERATING KIDS' ACCESS TO CARE ACT (AKACA): THIS LEGISLATION ALLOWS CHILDREN WITH COMPLEX MEDICAL CONDITIONS GREATER ACCESS TO PROVIDERS THAT WILL BETTER MEET THEIR NEEDS. (2) BLINATUMOMAB: IN SUPPORT OF A LETTER TO FDA COMMISSIONER DR. ROBERT M. CALIFF URGING THE U.S. FOOD AND DRUG ADMINISTRATION (FDA) TO LIFT A PARTIAL CLINICAL HOLD FOR TRIALS AALL1731 AND AALL1821, BOTH OF WHICH INCLUDE THE DELIVERY OF BLINATUMOMAB IN QUANTITIES AFFECTED BY THE HOLD. (3) H.R. 6664: INNOVATION IN PEDIATRIC DRUGS ACT OF 2023, A BIPARTISAN BILL INTRODUCED IN THE HOUSE OF REPRESENTATIVES TO STRENGTHEN THE DEVELOPMENT OF CHILDHOOD CANCER DRUGS. (4) SENATE FINANCE COMMITTEE DISCUSSION DRAFT OF THE MEDICARE DRUG SHORTAGE PREVENTION AND MITIGATION PROGRAM. CAC2 ADVOCATED ON BEHALF OF THE CHILDHOOD CANCER COMMUNITY'S DESIRE TO AMEND THE PROPOSED LEGISLATION TO ESTABLISH A FEDERALLY MAINTAINED LIST OF ESSENTIAL PEDIATRIC CHEMOTHERAPEUTIC DRUGS. AWARENESS CAC2 SERVES A CRITICALLY IMPORTANT ROLE IN EDUCATING THE GENERAL PUBLIC ABOUT THE MAGNITUDE OF PROBLEMS FACED BY CHILDREN AND ADOLESCENTS WITH CANCER AND THOSE WHO SURVIVE THEIR CANCERS. CAC2 MEMBERS COLLABORATE TO RAISE PUBLIC AWARENESS, WHICH IS CRUCIAL TO INCREASING RESEARCH FUNDS AND LEGISLATIVE EFFICACY. THIS YEAR'S ACCOMPLISHMENTS INCLUDE: (1) PUBLISHING THE 2024 EDITION OF THE CAC2 CHILDHOOD CANCER FACT LIBRARY; (2) PUBLISHING EVERY MONDAY THE CAC2 CHILDHOOD CANCER COMMUNITY NEWS DIGEST, PUBLISHED EVERY MONDAY; (3) PROVIDING CAC2 MEMBERS WITH THE PROCLAMATION TOOLKIT; (4) CONTRIBUTING TO THE GOLD LIGHTINGS CAMPAIGN TURN THE MAP GOLD AND THE GOLD AWARENESS PROJECT VIRTUAL CANDLELIGHT VIGIL; (5) PARTICIPATING IN INTERNATIONAL CHILDHOOD CANCER DAY (ICCD); AND (6) SUPPORTING CHILDHOOD CANCER INTERNATIONAL'S ABCS OF CHILDHOOD CANCER.RESEARCH & TREATMENT CAC2 DELIVERED THE PAIR WORKSHOP TO ESTABLISH STANDARDS AND PRINCIPLES FOR PEDIATRIC ONCOLOGY DRUG DEVELOPMENT THAT DRIVE MEANINGFUL AND ETHICAL INTERACTIONS BETWEEN PEDIATRIC ADVOCACY ORGANIZATIONS (PAOS) AND BIOPHARMACEUTICAL COMPANIES. IN ADDITION, CAC2 CONTINUES TO PARTICIPATE IN THE INTERNATIONAL CANCER RESEARCH PARTNERSHIP, COLLABORATING TO PROVIDE FUNDING DATA IN A CENTRAL REPOSITORY OF PEDIATRIC CANCER RESEARCH STUDIES. THIS TOOL HELPS ASSESS FUNDING PRIORITIES, IDENTIFY GAPS, AND RAISE AWARENESS FOR CHILDHOOD CANCER RESEARCH PROJECTS. FINALLY, CAC2 MEMBERS ATTENDED KEY CONFERENCES FOCUSED ON RESEARCH & TREATMENT FOR PEDIATRIC CANCERS, INCLUDING THE BIDEN CANCER MOONSHOT CHILDHOOD CANCER FORUM, BRAINSTORM SUMMIT, SIOP ANNUAL CONGRESS, AND THE ACCELERATE ANNUAL CONFERENCE. ATTENDEES WERE ABLE TO LEARN FROM EACH OTHER AND NETWORK TOGETHER. FINALLY, CAC2 MEMBERS SUPPORTED THE FDA APPROVAL OF ELFORNITHINE (IWILFIN), A PRESCRIPTION MEDICINE USED TO REDUCE THE RISK OF RELAPSE IN ADULTS AND CHILDREN WITH HIGH-RISK NEUROBLASTOMA (HRNB) WHO HAVE HAD AT LEAST A PARTIAL RESPONSE TO CERTAIN PRIOR THERAPIES.FAMILY SUPPORT - MORE THAN TWO-THIRDS OF CAC2 MEMBER ORGANIZATIONS PROVIDE DIRECT SUPPORT FOR FAMILIES. SHARING BEST PRACTICES AND COORDINATING ACTION HELPS US BETTER SUPPORT FAMILIES AND SURVIVORS OF CHILDHOOD CANCER. THIS YEAR THE CAC2 FAMILY SUPPORT INTEREST GROUP DEBUTED A NEW FORMAT FOR THE MONTHLY FAMILY SUPPORT INTEREST GROUP DROP-IN SESSIONS; DELIVERED THE FIRST-EVER SIBLING-FOCUSED DROP-IN SESSION, ALONG WITH THE CAC2 SURVIVORSHIP INTEREST GROUP; AND LAUNCHED A NEW MONTHLY GRIEF AND BEREAVEMENT MONTHLY DROP-IN SESSION.SURVIVORSHIP - SURVIVORS FACE PHYSICAL AND PSYCHOSOCIAL CHALLENGES THAT LEAD TO EDUCATIONAL, FINANCIAL, LEGAL, EMPLOYMENT, MEDICAL CARE, AND HEALTH INSURANCE CHALLENGES THROUGHOUT THEIR LIVES. BY PROVIDING SIMPLE ACCESS TO THE INFORMATION AND ASSISTANCE THEY NEED, CAC2 SEEKS TO EASE THE BURDEN FOR SURVIVORS AND THEIR CAREGIVERS AND FAMILIES. THE CAC2 SURVIVORSHIP INTEREST GROUP ACHIEVED TWO SIGNIFICANT COLLABORATIVE PROJECT MILESTONES THIS YEAR: (1) DESIGN FINALIZATION AND LAUNCH OF THE BETTER TOGETHER : SURVIVORSHIP CONNECTIONS DATABASE, AND (2) SUCCESSFUL LAUNCH OF THE CAC2 CHILDHOOD CANCER SURVIVORSHIP TOOLKIT.STRENGTHENING CAC2 OPERATIONS - AS CAC2 CONTINUES TO GROW IN BOTH MEMBERSHIP AND PROGRAM OFFERINGS, A PROFESSIONAL MANAGEMENT APPROACH WILL BE ESSENTIAL FOR SUSTAINED SUCCESS. RATHER THAN HIRING TRADITIONAL STAFF POSITIONS, THE CAC2 BOARD OF DIRECTORS CHOSE TO PURSUE AN ASSOCIATION MANAGEMENT COMPANY (AMC) MODEL, WHICH OFFERS SEVERAL STRATEGIC ADVANTAGES. THIS DECISION ENSURES THAT CAC2 HAS ACCESS TO: (1) A WIDE RANGE OF RESOURCES, EXPERTISE, AND EXPERIENCE ACROSS MULTIPLE DISCIPLINES, FROM ADMINISTRATION TO STRATEGIC PLANNING; (2) PROFESSIONAL GUIDANCE ON BEST PRACTICES AND PROVEN PLATFORMS TO DRIVE CAC2'S FUTURE EFFORTS; (3) FLEXIBLE STAFFING THAT ALLOWS ROLES TO BE FILLED WITH INDIVIDUALS WHOSE SKILL LEVELS MATCH THE TASKS AT HAND, ENSURING EFFICIENCY AND EXPERTISE; (4) SCALABILITY TO GROW OR ADJUST SUPPORT AS CAC2 EVOLVES, WITHOUT THE CHALLENGES OF HIRING AND ONBOARDING PERMANENT STAFF; AND (5) STABLE, CONSISTENT MANAGEMENT SUPPORT, PROVIDING CONTINUITY AS BOARD MEMBERS TRANSITION THROUGH THEIR TERMS.