Creutzfeldt-jakob Disease Foundation Inc

What it reported doing in 2024

The cjd foundation's nationwide family support programs include: helpline support and resources, family conference, family workshops, monthly virtual support groups, speaker series, bereavement support groups, caregiver support groups, and referrals to the teleneurology assessment program for cjd (tapcjd). The cjd foundation provides funding and referrals for tapcjd and offers guidance, education, and support to families affected by prion disease, while collecting natural history data that can be used for a variety of research purposes.helpline support: the cjd foundation responded to 2,563 calls and emails in 2024, providing information and referrals and responding to questions and concerns from family members, (continued on schedule o)medical professionals, funeral directors, and infection control specialists. We sent caregiving binders to more than 174 families and hospice providers. At our 2024 cjd foundation family conference, a total of 155 family members, prion disease experts, and professionals attended. Conference sessions included an update from the centers for disease control and prevention, research updates, and information on surveillance, treatment, and early diagnosis of cjd.support groups, webinars and speaker series: we hosted 43 teleconference support groups in 2024. These calls allow constituents who cannot attend in-person events to access an expert and address their questions and concerns. Interviews with prion disease experts were recorded and posted to the cjd foundation website.

Financial Efficiency

• Mission deployment rate: 61%; rating input score 61
• Program expense ratio: 85.8%; rating input score 86
• Fundraising efficiency: $27.68 raised per $1 spent on fundraising; rating input score 67; 67th 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: 1 of 8 controls in place; rating input score 12
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Limited
  • 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: 100%; rating input score 100; 72nd percentile among comparable filings
• 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: 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: 35%; rating input score 87; 87th percentile among comparable filings
• Total-asset coverage ratio: 4.92; rating input score 83; 83rd percentile among comparable filings
• Liabilities to assets ratio: 0.01; rating input score 88; 88th percentile among comparable filings
• Officer compensation ratio: 6%; rating input score 47; 47th percentile among comparable filings

Growth

• Program expense growth: 12.3% per year; rating input score 100; 71st percentile among comparable filings
• Revenue growth: 14.4% per year; rating input score 100; 80th percentile among comparable filings
• Asset growth: 20.7% per year; rating input score 100; 85th percentile among comparable filings