2025-04-11T10:58:01-05:00 2024-06-30 390859910 BAKER TILLY ADVISORY GROUP LP 1000 COMMERCE PARK DR WILLIAMSPORT PA 17701 990 2023-07-01 463616405 COALITION AGAINST CHILDHOOD CANCER COAL 2158886524 PO BOX 41913 PHILADELPHIA PA 19101 STEVEN L PESSAGNO TREASURER 2158886524 2025-03-30 1 1 JAIME L KUNTZ CPA P01272711 5703236023 2025-03-30 2023 2025-03-06 01:10:19Z VICTORIA BUENGER PHD PO BOX 41913 PHILADELPHIA PA 19101 210829 0 X WWW.CAC2.ORG X 2013 PA COLLABORATIVE NETWORK TO SUPPORT & SERVE THE CHILDHOOD CANCER COMMUNITY. 10 10 2 200 0 0 285417 210751 0 0 66 78 0 0 285483 210829 0 0 0 0 56418 26349 0 0 11450 190842 173243 247260 199592 38223 11237 269242 280370 121 12 269121 280358 X COALITION AGAINST CHILDHOOD CANCER (CAC2) IS A COLLABORATIVE NETWORK OF ORGANIZATIONS AND INDIVIDUALS WHO SUPPORT AND SERVE THE CHILDHOOD CANCER COMMUNITY. CONTINUED ON SCHEDULE O.THE MISSION OF CAC2 IS TO FOSTER AND SUSTAIN GREATER LEVELS OF COORDINATED ACTION, INFORMATION EXCHANGE, LEARNING, AND BROAD-BASED COLLABORATION THROUGH AGREED-UPON INITIATIVES IN FOUR AREAS: RESEARCH AND TREATMENT, FAMILY SUPPORT AND SURVIVORSHIP, AWARENESS BUILDING, AND ADVOCACY. CAC2 WORKS TO BENEFIT THE CHILDHOOD CANCER COMMUNITY - INCLUDING BOTH ITS MEMBERSHIP AND CHILDHOOD CANCER PATIENTS, SURVIVORS, AND THEIR FAMILIES - THROUGH GREATER LEVELS OF COORDINATED ACTION THAT LEVERAGE THE UNIQUE STRENGTHS AND EXPERTISE OF ITS MEMBERS, MINIMIZING WASTE OF PRECIOUS RESOURCES IN ORDER TO DRIVE BETTER OUTCOMES FOR CHILDHOOD CANCER PATIENTS AND THEIR FAMILIES. 0 0 105337 0 0 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. 105337 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 8 0 2 1 0 0 0 0 0 0 0 0 0 0 0 0 X 10 10 0 0 0 0 1 1 1 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AZ AR CA CO CT FL GA HI IL KS KY LA ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI DC X X STEVEN L PESSAGNO TREASURER 2158886524 700 S CLIFTON STREET PHILADELPHIA PA 191471978 ROBIN FRENCH CHAIR 20.00 X X 0 0 0 AMY GODKIN PAST CHAIR 7.00 X X 0 0 0 GINNY MCCLEAN VICE CHAIR 10.00 X X 0 0 0 SARAH BARTOSZ VICE CHAIR (UNTIL 11/23) 5.00 X X 0 0 0 MARIAH FORSTER OLSON SECRETARY 20.00 X X 0 0 0 STEVEN L PESSAGNO TREASURER, EX-OFFICIO 15.00 X X 0 0 0 LORI EARL DIRECTOR 5.00 X 0 0 0 SUSANNAH KOONTZ DIRECTOR 7.00 X 0 0 0 ANGELA LEE DIRECTOR 5.00 X 0 0 0 ANN RAMER DIRECTOR 7.00 X 0 0 0 AMY WEINSTEIN DIRECTOR 7.00 X 0 0 0 KIM MACNEILL DIRECTOR (UNTIL 10/23) 5.00 X 0 0 0 CAITLIN BARRETT IMPACT AREA LIAISON 10.00 X X 0 0 0 VICTORIA BUENGER PHD PRESIDENT EMERITUS, EX-OFFICIO 35.00 X X 0 0 0 MELISSA JACKSON EXECUTIVE DIRECTOR (UNTIL 12/23) 35.00 X 40096 0 0 40096 0 0 0 0 0 0 0 87524 123227 210751 78 78 210829 0 0 78 X 24058 17322 6736 2291 2291 13500 13500 2282 2282 21943 21943 33566 33566 187 187 2487 2487 COLLABORATION INITIATIV 81933 81933 GRANT DEVELOPMENT 11450 11450 WEBSITE / MEMBER HUB 5895 5895 199592 105337 82805 11450 23545 11451 245697 268919 269242 280370 121 12 121 12 X 74526 36834 194595 243524 269121 280358 269242 280370 11237 0 X 0 0 0 X 120118 228031 154296 285417 210751 998613 120118 228031 154296 285417 210751 998613 201575 797038 312 122 67 66 78 645 999258 0.79760 0.83790 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED FORM 990, PART VI, SECTION A, LINE 1A THE EXECUTIVE COMMITTEE SHALL BE COMPOSED OF THE OFFICERS OF THE CORPORATION. THE EXECUTIVE COMMITTEE SHALL BE AUTHORIZED TO ACT FOR THE BOARD BETWEEN ITS REGULAR MEETINGS. EXCEPT AS OTHERWISE PROVIDED BY THESE BYLAWS OR BY RESOLUTION OF THE BOARD, THE EXECUTIVE COMMITTEE SHALL HAVE AND MAY EXERCISE ALL OF THE POWERS AND AUTHORITY OF THE BOARD IN THE MANAGEMENT OF THE CORPORATION. FORM 990, PART VI, SECTION A, LINE 6 THE CORPORATION SHALL HAVE TWO CLASSES OF VOTING MEMBERS (THE "VOTING MEMBERS"), DENOTED AS ORGANIZATION MEMBERS AND INDIVIDUAL MEMBERS. THE CORPORATION SHALL ALSO HAVE THREE CLASSES OF NON-VOTING MEMBERS (THE "NON-VOTING MEMBERS"), DENOTED AS ASSOCIATE MEMBERS, STUDENT MEMBERS, AND SUPPORTING MEMBERS. TO BE ELIGIBLE FOR MEMBERSHIP AS AN ORGANIZATION MEMBER, AN ENTITY MUST BE (A) A CHILDHOOD CANCER ORGANIZATION OR COALITION, OR (B) A NONPROFIT, TAX-EXEMPT ORGANIZATION WITH A PRIMARY INTEREST IN CHILDHOOD CANCER ISSUES. ORGANIZATION MEMBERS SHALL APPOINT A REPRESENTATIVE TO ATTEND MEETINGS OF THE MEMBERS AND VOTE THEREIN (THE ORGANIZATION REPRESENTATIVE") BY PROVIDING WRITTEN NOTICE OF THE APPOINTMENT TO THE CORPORATION. EACH INDIVIDUAL MEMBER SHALL BE A NATURAL PERSON AT LEAST 18 YEARS OF AGE WHO NEED NOT BE A RESIDENT OF PENNSYLVANIA. TO BE ELIGIBLE FOR MEMBERSHIP AS AN INDIVIDUAL MEMBER, AN INDIVIDUAL MUST NOT BE SERVING CURRENTLY ON THE BOARD OF DIRECTORS OR ON THE PAID STAFF OF ANY ORGANIZATION MEMBER. INDIVIDUALS WHO ARE INELIGIBLE TO BE INDIVIDUAL MEMBERS BECAUSE THEY ARE EITHER CURRENTLY ON THE BOARD OF DIRECTORS OR ON THE PAID STAFF OF AN ORGANIZATION MEMBER ARE ELIGIBLE FOR MEMBERSHIP AS AN ASSOCIATE MEMBER. EACH ASSOCIATE MEMBER SHALL BE A NATURAL PERSON AT LEAST 18 YEARS OF AGE WHO NEED NOT BE A RESIDENT OF PENNSYLVANIA. TO BE ELIGIBLE FOR MEMBERSHIP AS A STUDENT MEMBER, AN INDIVIDUAL MUST BE A STUDENT WITH CURRENT AND VALID STUDENT IDENTIFICATION CREDENTIALS. EACH STUDENT MEMBER SHALL BE A NATURAL PERSON WHO NEED NOT BE A RESIDENT OF PENNSYLVANIA. NONPROFIT AND FOR-PROFIT ORGANIZATIONS THAT DO NOT QUALIFY AS ORGANIZATION MEMBERS SHALL BE ELIGIBLE FOR MEMBERSHIP AS SUPPORTING MEMBERS. FORM 990, PART VI, SECTION A, LINE 7A THE BOARD SHALL CONSIST OF NO FEWER THAN SEVEN (7) AND NO MORE THAN TWENTY-ONE (21) PERSONS, DIVIDED INTO THREE EQUAL CLASSES. THE TERM OF OFFICE OF ONE CLASS SHALL EXPIRE ON THE 30TH DAY OF JUNE IN EACH YEAR. EACH CLASS SHALL BE ELECTED BY THE VOTING MEMBERS ENTITLED TO ELECT DIRECTORS FOR TERMS OF THREE (3) YEARS, EXCEPT IN CASE OF A VACANCY IN ANY CLASS, IN WHICH CASE THE VACANCY SHALL BE FILLED FOR THE BALANCE OF THE TERM OF SUCH CLASS. FORM 990, PART VI, SECTION A, LINE 7B MEMBERS VOTE ON AND EITHER APPROVE OR REJECT COLLABORATIVE PROJECT APPROVALS. FORM 990, PART VI, SECTION B, LINE 11B THE BOARD MEMBERS RECEIVE A COPY OF THE DRAFT AND ARE GIVEN TIME TO REVIEW AND ASK QUESTIONS BEFORE THE RETURN IS FINALIZED. FORM 990, PART VI, SECTION B, LINE 12C A CONFLICT OF INTEREST POLICY IS HANDED OUT AND SIGNED BY EVERY BOARD MEMBER ANNUALLY AT THE JUNE BOARD MEETING. THE SECRETARY WILL COLLECT ALL SIGNED STATEMENTS FOR FILE. FORM 990, PART VI, SECTION B, LINE 15A CAC2 ESTABLISHED A LEADERSHIP TRANSITION PLANNING TEAM THAT LED THE IMPLEMENTATION FOR CHANGES TO THE ORGANIZATIONAL STRUCTURE OF CAC2, INCLUDING THE SEARCH, RECRUITMENT, AND HIRING OF THE MANAGING DIRECTOR. THE TEAM ESTABLISHED A SEARCH COMMITTEE SPECIFICALLY FOCUSED ON THE MANAGING DIRECTOR ROLE; THAT COMMITTEE UTILIZED BENCHMARKS FOR NON-PROFIT ORGANIZATIONS BOTH WITHIN AND EXTERNAL TO THE CHILDHOOD CANCER COMMUNITY TO SET THE SALARY RANGE FOR THE POSITION. THE COMMITTEE LOOKED AT SALARIES FOR ROLES SUCH AS EXECUTIVE DIRECTOR, OPERATIONS DIRECTORS, AND PROJECT DIRECTORS, AS THE RESPONSIBILITIES FOR THE CAC2 MANAGING DIRECTOR ROLE CONSTITUTED A HYBRID OF SUCH ROLES. FINALLY, THE COMMITTEE LOOKED AT GEOGRAPHIC DIFFERENCES IN SALARY RANGES. THE SEARCH COMMITTEE MADE RECOMMENDATIONS ON THE SALARY RANGE AND THE SALARY FOR THE SELECTED CANDIDATE TO THE LEADERSHIP TRANSITION PLANNING TEAM, WHICH, IN TURN, CONFIRMED THE RECOMMENDATIONS FOR REFERRAL TO THE BOARD OF DIRECTORS FOR FINAL DECISION-MAKING. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G PROFESSIONAL SERVICES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 20,536. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 20,536. PAYROLL FEES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 1,407. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,407.