Global Down Syndrome Foundation

What it reported doing in 2024

Research and clinical care: down syndrome is when a person is born with three copies of chromosome 21 instead of the usual two. Before global was established, down syndrome was the least funded genetic condition by the national institutes of health (nih) and very little was being done to increase research or create evidence-based medical care guidelines. -global established the first down syndrome research and medical care institute in our country - our affiliate, the crnic institute for down syndrome. -global established one of the largest down syndrome medical centers in the world serving 2,500+ children with down syndrome from 35 states and 11 countrys - our affiliate the sie center for down syndrome. -global successfully lobbied and advocated for the establishment of the trans-nih down syndrome research program called "include- and have led to the renaissance of down syndrome research today. -global successfully lobbied and advocated for the national institutes of aging to launch their longitudinal ad-ds biomarker grants. -global created the first evidenced-based global medical care guidelines for adults with down syndrome published in the journal of american medical journal (jama) -global established the be beautiful be yourself fashion show, the world's largest fundraiser benefitting people with down syndrome and the acceptability gala, the first down syndrome research fundraiser in Washington dc, -global organized the: first down syndrome research summit in the us in 2006 headed by nobel laureate tom cech first down syndrome research conference at nih in 2010 focused on databases, biobanks & registries which resulted in nih creating the dsconnects down syndrome registry first down syndrome & alzheimer's disease workshop in collaboration with the alzheimer's association and nia in 2012 first down syndrome & alzheimer's disease research grants co-funded by global and the alzheimer's association. Global is delivering on our mission through groundbreaking research with our affiliates. For example we have: - discovered that down syndrome is an immune system disorder and we have conducted two clinical trials testing drugs that normalize the immune system and have had profound results; we are currently organizing a 3rd such clinical trial - hold an nih include clinical trial grant aimed at effectively treating down syndrome regression disorder - discovered that people with down syndrome are hypoxic - discovered three distinct phenotypes in down syndrome that could lead to more effective "precision medicine" - supported the first clinical trials testing promising alzheimer's drugs in people with down syndrome - published "the" behavioral guidelines for children with down syndrome - created a rubric for test children with down syndrome for dysphagia - published groundbreaking natural history studies in infantile spasms, physical therapy, neurology and more.

Financial Efficiency

• Mission deployment rate: 73.2%; rating input score 73
• Program expense ratio: 72.5%; rating input score 72
• Fundraising efficiency: $7.97 raised per $1 spent on fundraising; rating input score 30; 30th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.1%; rating input score 94; 23rd percentile among comparable filings
• Pay-setting controls: 2 of 6 controls in place; rating input score 33
  • Compensation committee: Missing
  • 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: 3 of 8 controls in place; rating input score 38
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Pass
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 47.1%; rating input score 47; 15th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 66.7%; rating input score 67; 11th 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: 0.4%; rating input score 35; 35th percentile among comparable filings
• Total-asset coverage ratio: 1.85; rating input score 59; 59th percentile among comparable filings
• Liabilities to assets ratio: 0.16; rating input score 49; 49th percentile among comparable filings
• Officer compensation ratio: 4.1%; rating input score 60; 60th percentile among comparable filings

Growth

• Program expense growth: 4.1% per year; rating input score 100; 34th percentile among comparable filings
• Revenue growth: 2.7% per year; rating input score 100; 25th percentile among comparable filings
• Asset growth: 13.1% per year; rating input score 100; 69th percentile among comparable filings