Esophageal Cancer Action Network Inc

What it reported doing in 2024

An active voice for patients at risk for and diagnosed with esophageal cancer ecan successfully advocated with the national cancer institute to change course and include esophageal cancer in its genome mapping project known as the cancer genome atlas (tcga) in 2011. The groundbreaking findings of that research led to the first fda approval of immunotherapy for esophageal cancer patients in 2021. Ecan's efforts to represent the interests of patients at risk for esophageal cancer has continued and, thus far, has resulted in the addition of nearly 20 million to federal budget for esophageal cancer. Ecan successfully led the charge to make sure that esophageal cancer researchers have access to a multi-million-dollar cancer research fund administered by the dept. Of defense. As a result, esophageal cancer researchers have been awarded millions of dollars in funding since 2021 and continue to be eligible to apply for funding every year. In 2024, ecan hosted its first in-person hill day where members of our ecan community had the opportunity to meet with legislators and their staff to advocate for the needs of esophageal cancer patients and those at risk for the disease, including the continuation of esophageal cancer researchers' access to the department of defense cancer research program. Ecan hosts a grassroots leadership training program to prepare members of our community to be the best advocates possible for those at risk for or diagnosed with esophageal cancer in 2017, ecan filed a petition with the food and drug administration requesting that warning labels be put on over-the-counter heartburn remedies to alert the public to the fact that heartburn can cause cancer. Though the fda did not approve the request, it provided clear guidance on how such a petition could be successful in the future. In 2024, ecan weighed in on new professional guidelines on treating barrett's esophagus, the precursor to esophageal cancer. Ecan asked for a change that would allow for treatment of patients who have undergone tests showing a higher risk of progressing to cancer. That change was implemented in the final guidelines. As a founding member of the deadliest cancers coalition, ecan strives to ensure that the national cancer institute develops a focus on esophageal cancer works to ensure adequate funding for research into the prevention, detection, treatment and cure of esophageal cancer. Esophageal cancer awareness month in 2009, ecan led the effort to have april designated as esophageal cancer awareness month in states throughout the united states. With ecan's support over the past 15 years, more than 150 gubernatorial declarations of ec awareness month have been achieved throughout the country and in some other nations, as well. April is now observed as ec awareness month by companies, organizations and governments across the nation - and the world. Ecan provides robust programming for esophageal cancer awareness month, including providing a text-a-day-service with awareness messages for our community to share, yard signs and periwinkle blue lights so supporters can make a statement in april, and more. In 2024, we hosted an animated billboard in times square in New York city warning that heartburn can cause cancer and recognizing esophageal cancer awareness month. Supporting patients and families ecan has a long-term partnership with smart patients, an online support platform that includes a focus on esophageal cancer. Ecan also provides free access to the intelligent nutrition assistant ina that gives 24/7 answers to questions about nutrition and eating issues in partnership with savor health. Ecan's partnership with massive bio has resulted in a free clinical trial matching service for our ecan community. Providing trustworthy, up-to-date education for patients and families in 2023, ecan created a series of animated educational modules that clearly explain the basics of esophageal cancer and its precursor barrett's esophagus. The project

Financial Efficiency

• Mission deployment rate: 93.4%; rating input score 93
• Program expense ratio: 77.7%; rating input score 78
• Fundraising efficiency: $4.92 raised per $1 spent on fundraising; rating input score 17; 17th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: Limited
• Grant itemization coverage: Limited
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 6 of 8 controls in place; rating input score 75
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Fail
  • Document-retention policy: Fail
  • CEO compensation review process: Pass
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -18.7%; rating input score 10; 10th percentile among comparable filings
• Total-asset coverage ratio: 0.35; rating input score 16; 16th percentile among comparable filings
• Liabilities to assets ratio: 0.72; rating input score 10; 10th percentile among comparable filings
• Officer compensation ratio: 19.8%; rating input score 15; 15th percentile among comparable filings

Growth

• Program expense growth: 10.2% per year; rating input score 100; 63rd percentile among comparable filings
• Revenue growth: 7.8% per year; rating input score 100; 58th percentile among comparable filings
• Asset growth: 17.5% per year; rating input score 100; 77th percentile among comparable filings