Ataxia Telangiectasia Children's Project Inc

What it reported doing in 2024

Family SupportThe A-T Children's Project developed and maintains an A-T patient registry. In addition to helping families searching for the proper diagnosis, the Organization helps them by providing support, putting them in touch with other A-T families, and assisting them with scheduling evaluations at the A-T Clinical Center at Johns Hopkins. The families contact the Organization through email, phone, website, and social media platforms such as Facebook. Each newly diagnosed family gets an information package including the Caring for People with A-T handbook. The Organization typically corresponds and speaks with parents often to help them understand this rare disease and what it means for their families throughout their children's lives. A-T families and extended family members also receive information updating them on current A-T biomedical and clinical research happenings. The Organization also publishes and distributes their Caring for People with A-T handbook free of charge. This handbook gives specific medical information about A-T for families and caregivers. The Organization also plans and hosts Caregiver Weekends periodically to give parents and other caregivers opportunities to formally and informally build connections; speak openly about sensitive subjects related to A-T; and, learn directly from clinicians and researchers.

Financial Efficiency

• Mission deployment rate: 100%; rating input score 100
• Program expense ratio: 88.4%; rating input score 88
• Fundraising efficiency: $10.28 raised per $1 spent on fundraising; rating input score 39; 39th percentile among comparable filings

Transparency & Controls

• Consistency checks: 93.3%; rating input score 93; 22nd percentile among comparable filings
• Pay-setting controls: 3 of 6 controls in place; rating input score 50
  • Compensation committee: Pass
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: 2 of 8 controls in place; rating input score 25
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Limited
  • May suspend future funding: Limited
  • Requires financial reports: Limited
  • Conducts site visits: Limited
  • Requires grant agreements: Limited
  • May require repayment: Limited
• Grant itemization coverage: 99.7%; rating input score 100; 50th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 90%; rating input score 90; 23rd percentile among comparable filings
• Governance controls: 8 of 8 controls in place; rating input score 100
  • 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: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -22.6%; rating input score 8; 8th percentile among comparable filings
• Total-asset coverage ratio: 1.39; rating input score 53; 53rd percentile among comparable filings
• Liabilities to assets ratio: 0.74; rating input score 10; 10th percentile among comparable filings
• Officer compensation ratio: 10.9%; rating input score 34; 34th percentile among comparable filings

Growth

• Program expense growth: 12.2% per year; rating input score 100; 69th percentile among comparable filings
• Revenue growth: 8% per year; rating input score 100; 59th percentile among comparable filings
• Asset growth: 17.6% per year; rating input score 100; 78th percentile among comparable filings