Gorlin Syndrome Alliance

What it reported doing in 2024

The gorlin syndrome alliance (gsa) advances its mission through targeted program services designed to support patients and their families, while coalescing the broader community, including patients, scientists and clinicians, around priorities that improve how patients live with the disease now, and in the future.research grant programin 2024, the gsa organized, managed, and funded the only research grant program for gorlin syndrome, dedicated to improving quality of life for patients and families affected. Through targeted investment in scientific learnings and innovation, this program accelerates discoveries in the field. Our objective is to focus researchers' efforts on the questions that will illuminate root mechanisms of disease, and improve clinical outcomes on measures that matter to patients. In 2024, the gsa received more than double the number of research proposal applications from the year prior. The grant review committee selected the proposal "defining the bcc microenvironment change in response to smoothened inhibition: identification of a role for addition of checkpoint inhibitor to optimize antitumor therapy for overwhelming disease".patient registry data collectionthe gsa maintained a gorlin syndrome patient registry, which enrolls patients and collects anonymized health histories from participants for the purpose of centralizing data about gorlin syndrome. The data will drive discoveries. The gsa enrolled new participants during 2024, with the objective of growing the registry participation year on year.educational resourcesthe gsa provided free, publicly available educational resources, including patient focused educational materials, webinars, and expert presentations. These materials are made available at no cost to individuals across the us through our website and youtube channel.community and patient support servicesthe gsa facilitated 12 virtual support group meetings, 4 town hall meetings, and ad hoc in-person gatherings for patients and families. Telephonic support and assistance was provided throughout the year, with staff and volunteers responding to 119 incoming telephone calls and countless emails from patients, families, or clinicians. Information dissemination and communicationsthrough its communications strategy, the gsa distributed (12) monthly e-newsletters, with additional, targeted research updates. Information included emerging therapies, clinical trial opportunities, and patient support services. Through volunteers and staff, the gsa also made hundreds of calls to community members to ensure critical information was shared. In addition, research and grant opportunity announcements were circulated to clinicians and scientists in the gsa network.

Financial Efficiency

• Mission deployment rate: 58%; rating input score 58
• Program expense ratio: 64.9%; rating input score 65
• Fundraising efficiency: $5.97 raised per $1 spent on fundraising; rating input score 26; 26th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 64th 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: 5 of 8 controls in place; rating input score 62
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Fail
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Fail
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: 12.1%; rating input score 63; 63rd percentile among comparable filings
• Total-asset coverage ratio: 1.56; rating input score 53; 53rd percentile among comparable filings
• Liabilities to assets ratio: 0.41; rating input score 13; 13th percentile among comparable filings
• Officer compensation ratio: 31%; rating input score 10; 10th percentile among comparable filings

Growth

• Program expense growth: 5.9% per year; rating input score 100; 57th percentile among comparable filings
• Revenue growth: 6.7% per year; rating input score 100; 61st percentile among comparable filings
• Asset growth: 15.3% per year; rating input score 100; 78th percentile among comparable filings