Intl Cancer Advocacy Network

“A copy of form 990 is provided to board members for their review before the form 990 is filed. The chairman of the board of trustees and the chairs of the governance and compensation committees review, with ican's ceo, comments regarding drafts of the form 990. Input is obtained from members of ican's internal audit committee and special events committees. At the direction and approval of the full board, a subgroup of the organization's executive officers then completes its final review, and the form 990 is filed.”

“Board members annually disclose in writing all potential or actual conflicts of interest to the board governance committee.”

“Since 2003, the organization has annually reviewed the ceo's compensation, with an analysis that includes comparisons to other cancer organization chief executive officers' compensation as well as other health care nonprofit organization chief executive officers' salaries. Several years ago, the organization benefited from an external organization's analysis that is devoted entirely to for-profit and nonprofit executives' compensation. The process at ican involves the compensation committee chairman's annual review of the ceo and key staff's compensation, on behalf of the board of trustees, based on internal and external inputs and reviews and the compensation committee's recommendation to the board of any salary increase or employee benefits such as health insurance and other insurance.”

“The process at ican involves the compensation committee chairman's annual review of the ceo and key staff's compensation, on behalf of the board of trustees, based on internal and external inputs and reviews and the compensation committee's recommendation to the board of any salary increase or employee benefits such as health insurance and other insurance.”

“The organization's website has an extensive board governance section. The organization's form 990 as well as all board governance documents, including conflict of interest policy, whistleblower policy, and documents retention policy, are available on ican's website (compendium of board policies) and at available at guidestar/candid as well as charity navigator.”

“Ican's mission is two-fold: to optimize stage iv cancer patient survival and work to attain the highest possible quality of life. Ican assists stage iv cancer patients with 1) direct patient navigation and customized advocacy services; 2) referrals to oncologists in academic medical centers as well as community practices; 3) educating patients regarding the imperative of molecular profiling; 4) expediting access to molecular profiling; 5) educating patients and their care partners regarding clinical trials and molecular matching of the patient to clinical trials; and 6) expediting patient access to compassionate use/expanded access programs. Ican is a pan-heme cancer, pan-solid tumor, pan-sarcoma, and pan-rare cancer patient advocacy organization and research advocacy organization. Ican also focuses on expanding patient access and galvanizing our collaborators to assist under-resourced patient communities in the us and abroad with customized information services. Ican annually awards research grants based on special event proceeds and spontaneous memorial and tribute donations supporting our international research consortium's goal to defeat rare cancers such as egfr exon 20, her2 exon 20, met alterations, and nrg1 fusions. Ican's overarching focus is our detail-oriented patient program services and research advocacy services working closely with patients, care partners, thoracic oncologists, clinicians in specialty areas, scientists, and investigators who share our research goals. See askican.org and under the ican nonprofit umbrella: exon20group.org, biomarkercollaborative.org, metcrusaders.org,pdl1amplifieds.org, and nrg1energizers.org.”

“Patient navigation programs, including patient program services/research advocacy programs/cancer research services of which 360,000 was awarded in grants to investigators associated with or collaborating with ican's international research consortium, including the university of texas md anderson cancer center, the university of texas southwestern, the university of pennsylvania, dana-farber cancer institute and city of hope. Grants were awarded for proposals relating to molecular alterations and resistance mechanisms, development of drugs with new mechanisms of action, development of early detection assays,and research regarding leptomeningeal disease (lmd). The 2024-2025 grant cycle was funded by ican's special events, including the annual fistbump fundraiser and the annual applied underwriting golf tournament as well as by ican memorial and tribute programs. Ican's exon 20 international research consortium consists of top thoracic research oncologists and scientists who have produced an array of transformative and practice changing journal articles that are propelling the field of actionable mutations forward. Ican's patient services focus on hematological, solid tumor, synchronous cancers, and rare cancers. Our patients, care partners, and research advocates review clinical trial concepts, protocols, and informed consent forms. The organization's oncology nursing services and angel buddies/met mentors (peer-to-peer patient and care partner advisors) assist patients and their families with side effects mitigation strategies throughout clinical trials and standard treatment. Under the ican nonprofit umbrella, ican manages the exon 20 group (egfr exon 20 warriors/her2 warriors), the met crusaders, the biomarker collaborative, the pd-l1 amplifieds, and the nrg1 energizers.”

“Patient, care partner, and clinician education/ u.s. And global patient access programs-focusing on patient access to molecular testing and precision medicine; u.s. And global access issues related to under- resourced patient communities; early detection (imaging and molecular diagnostics); ongoing health information projects for exon 20 group, met crusaders, biomarker collaborative, and pan-tumor ican programs; and access issues regarding expanded access/pre-approval access/compassionate use programs in the u.s. And abroad. Ican's public policy advocacy efforts were vigorously pursued at the state and federal levels, including issues such as the inflation reduction act and fixing the small molecule penalty; weighing in on prescription drug affordability boards; supporting pbm reform; supporting 340b program reform; advocating for the preservation of the bayh-dole program; supporting biomarker testing bills (passed in 22 states and counting); supporting co-pay accumulator and rebate reform bills (active participant in the "all copays count coalition"), and opposing state-led efforts that impede patient access to novel therapeutics, such as step therapy/fail- first therapy where we have vigorously opposed those anti-patient practices since 2012.”

“Molecular profiling connection services/clinical trials matching services: 1) advising patients on the importance of next-generation sequencing and educating them about the array of molecular profiling technologies that can either be accessed by patients and/or researchers--dna, rna, and thus multi-omics: genomics, proteomics, transcriptomics, metabolomics, methylation, immune cell studies, and so forth; 2) reviewing molecular profiling reports with patients and their care partners; 3) convening ad hoc molecular tumor boards where needed, with the input of members of ican's biomarkers council, physicians council, and drug development council; 4) educating patients about molecular tumor boards (e.g. Target cancer's track study, asco tapur study; roche navify); and, 5) connecting patients to principal investigators and study teams on a pan-tumor/pan- heme/pan-rare cancer basis if an appropriate clinical trial is a molecular match. Ican and its support groups are also engaged in the areas of decentralizing trials; "just-in-time" trials; and expediting the transfer of patients from one clinical trials site (mid-regimen) to another more convenient site (u.s. To u.s. Or eu to u.s.). Ican, the exon 20 group, and the met crusaders specialize in clinical trial accrual and retention issues as well as clinical trials site selection issues. The biomarker collaborative 1) connects patients to both the appropriate specific biomarker support group and the relevant general organizations that cover the patient's specific cancer type; and 2) educates patients about their driver mutation, amplification or fusion (if identified by the relevant laboratory's report) as well as their gene co-alterations. Ican and its support organizations each stress the importance of multi-stakeholder collaborations with research advocates, patient advocates, community advocates, clinicians, and scientists.”

“Patient services 132,900 0 0 patient access 276,004 0 0 outside services 6,076 0 0 total 414,980 0 0”