International Cancer Advocacy Network

It is important to note that ICAN has never engaged in a national or state telemarketing fundraising campaign or conducted a national mailing campaign or a state mass mailing or even targeted mailing campaign. And we plan to keep it that way. The overwhelming majority of our revenues come from the spontaneous gifts of grateful patients and their families.

ICAN specifically is working toward:

1) Providing concrete strategic options for Stage IV patients across the U.S. and abroad who have been told by their oncologists that no additional options were available either from the standard drug pipeline or in clinical trials (or through another treatment modality such as surgery, radiation oncology, interventional radiology, or medical oncology);

2) Expanding the focus of our research and technology initiatives;

3) Expanding our extensive local, national, and global network of highly talented volunteers, who are devoted to optimizing patient outcomes by engaging industry, academia, government, and regulatory affairs experts across relevant issues and platforms; and

4) Converting the rare cancer driven by an exon 20 insertion mutation from a lethal to a chronic, maintenance disease through the organization's special multi-stakeholder global coalition and biomarker support group called the Exon 20 Group, reaching patients in 82 countries. [Based on the work of the John V. Heymach, MD, PhD Laboratory at The University of Texas MD Anderson Cancer Center, HER2 exon 20 insertions and EGFR exon 20 insertions are each found in approximately 25 cancers, including lung cancer.]

5) Converting MET-altered cancers from lethal diseases to manageable diseases through the organization's multi-stakeholder global coalition and biomarker support group, the MET Crusaders. Work with top MET experts in academic medicine and community oncology.

6) Work on PD-L1 Amplified (CD274+) Awareness Projects.

7) Continuing collaborations and involvement in the following external organizations:

IASLC Rare Tumors Committee (Research Advocate)
Banner MD Anderson IRB (Patient Advocate)
23andMe Lung Cancer Genetics Study (Patient Advisory Board)
UTSW/MD Anderson Lung SPORE (Research Advocate)
SWOG Early Therapeutics Committee (Research Advocate)
ASCO Molecular Tumor Board for the TAPUR Study (Patient Advocate)
Small Cell Lung Cancer Consortium (Research Advocate)
Charity Navigator Nonprofit Leaders (Member, second term)

ICAN's strategies for making this happen include building our international, multi-stakeholder working groups, the Exon 20 Group, the MET Crusaders, and the Biomarker Collaborative; building auxiliary advisory councils and Friends of ICAN support groups. ICAN will also be focusing on enhanced fund development and planned giving in addition to more robust special event fundraising efforts.

ICAN also looks to the tremendous diversity and global influence among members of its boards, councils, committees, and worldwide volunteer network to achieve success:

ICAN's global network consists of patient advocates, research advocates, research volunteers, nursing volunteers, and event volunteers.

ICAN's Angel Buddy peer-to-peer counseling program pairs patients with one to four different ICAN patient/family mentors (depending on the specific case and the needs of the patient).

ICAN, comprised of a multiplicity of top notch stakeholders, is testing different molecular tumor board formats to fit the needs of a diversity of patients and clinicians.

ICAN's capabilities for doing this include an impressive local, national and indeed global volunteer network and brain trust of both visionaries and achievers. ICAN is a cancer advocacy organization packing a national punch with a global reach.

Many of our supporters have asked us how we have managed to have as our most recent 990 "ratio" a coveted 94% of our Total Expenses allocated to Patient Program Services. It's easy. Management/General is handled by tremendous long-standing volunteers who've been with us since 2009. At the beginning of the recession in 2008, we knew that we could not continue operating with the normal nonprofit paradigm. Our CEO went to the Board and said that we had to implement a new paradigm of recruiting a global volunteer network of highly talented people who could fill in for the traditional staff who departed ICAN at the start of the recession. We thus embarked on one of the most aggressive campaigns ever to recruit top flight volunteer talent. And Pat McReynolds, a local CBS anchor said in March, 2013, introducing our CEO who was a finalist in the Organization of Nonprofit Executives' Leader of the Year awards: "Marcia Horn has taken a traditional nonprofit and transformed it into a global volunteer colossus."

Here are the areas where we secured volunteer talent to replace previously paid staff:

1) Research Admin Services--led by seasoned admin/tech/citation professionals since 2009
2) Research Volunteers--highly-educated research graduate students, retirees, nursing professionals, and biopharma industry veterans--several of whom have been with us since 2009
3) Special Events--100 percent of sponsorship recruitment and tournament foursomes procurement is handled by our board and event leadership--whether our Golf Invitational in Scottsdale, or our Fistbump Fundraiser in Manlius, New York--thus allowing ICAN to concentrate on its sole mission of improving patient outcomes. Our Texas Board of Advisors, led by Chuck Clayton, handles every detail of Poker and Casino events.
4) Special Projects Administration--we are blessed with incredible committees who handle every logistical detail
5) Fund Development--handled by our lay leadership who volunteer their time and talents
6) Web Development and Information Technology--impressively handled by all volunteers since 2002
7) Audit Committee, Board Governance, Facilities--handled by our Board, professional council members, and volunteers since 1996
8) Clerical assistance to Management--donated by an all volunteer crew--Special Projects, Donor Services, and Special Assistants
9) Grant Administration--Board oversight as well as by the Exon 20 Group leadership and external advisors and MET Crusaders external advisors

ICAN salutes diversity, and our boards are comprised of: four Asians, one African, two African Americans, two Latinos/Latinas. Our councils are comprised of eleven Asians, two Latinos, and two Africans.

ICAN has made great progress in leading the way in the field of direct patient navigation services, including molecular profiling ordering, interpretation, and clinical trials sequencing strategies. The organization has expertise in clinical trials enrollment issues and retention issues.

Members of our Scientific Advisory Council continue to be the most productive drug discovery group in the world in terms of efficacy of compounds in clinical trials and FDA approvals. Our flagship Personalized Medicine Cancer Case Navigation Programs and special project known as the Exon 20 Group continue to garner praise from patients and oncologists across the country and around the world.

Success at ICAN is defined as Never Allowing a State IV Cancer Patient to be Written Off. Our patients, patient families, board and staff leadership, and the organization's many volunteers can amply testify to the fact that ICAN patient advocates work every day to achieve ICAN's aspirational goal.