National Tuberous Sclerosis Association

What it reported doing in 2025

Research program stimulates and supports basic, translational, and clinical research on the various manifestations of tuberous sclerosis complex (tsc) to further the development of clinical therapies and, ultimately, a cure for tsc. Directed by steven l. Roberds, phd, chief scientific officer, the tsc alliance research program builds and fosters collaborations between basic and clinical researchers by collecting and distributing tsc natural history data and biosamples, through collaborative preclinical and clinical research programs, and by hosting biennial international tsc research conferences.since 1984, the tsc alliance has invested more than $44 million into tsc research projects through grants and contracts: $21.6 million in research grants and postdoctoral fellowships, $6.2 million into the natural history database and biosample repository, $14.3 million into the preclinical consortium, and $2.3 million into the clinical research consortium and clinical research network. Grant and fellowship applications are reviewed in a three-step process: (1) all applications are reviewed by a committee comprised of scientists knowledgeable about the topic area for scientific merit and of caregivers or adults affected by tsc for potential impact on the lives of those affected by tsc; (2) the science and medical committee of the board of directors evaluates the grant review committee's recommendations and the relevance of the applications to the tsc alliance's funding priorities; and (3) the board of directors then reviews the recommendations of the science and medical committee and makes final approval for funding. For a complete list of currently funded projects and an archive of past awardees, please visit tscalliance.org/researchers/grants-funding/.implemented in 2006, the tsc natural history database (nhd) captures clinical data to document the impact of the disease on a person's health over his/her lifetime. The database serves as a resource of information that helps tsc researchers better understand the progression of the disease, design hypothesis-driven questions to hasten the discovery of new treatments and identify persons with tsc who are eligible to participate in research studies. As of december 2025, the natural history database contained 2,932 participants enrolled in the project from among 24 tsc clinic sites and through the tsc alliance. The tsc alliance provides funding to participating clinics to perform data entry, monitors the integrity of the database, and makes data available to investigators to answer specific research questions and identify potential participants for clinical trials and studies building upon the natural history database, the tsc biosample repository is a tsc alliance-directed project initiated in 2014 that will impact research for decades to come. The tsc alliance's science and medical committee identified this as a gap that can only be filled effectively with leadership of the tsc alliance, guided by a steering committee of clinicians, researchers and community members. High-quality biosamples such as blood, dna, and tissues linked to detailed clinical data are critical for researchers to understand why tsc is so different from person to person. Samples in the repository are linked to detailed clinical data in our existing tsc natural history database and are available to qualified researchers worldwide. Samples are housed at and distributed from the van andel institute in grand rapids, mi, under control of the tsc alliance. As of december 2025, the biosample repository has acquired 3,117 blood, buccal (cheek) swab, or tissue samples. Since inception, 4,036 portions of samples have been distributed to 57 distinct researchers for 63 distinct projects.the organization continues to grow the biosample repository by collecting blood samples annually from participants who volunteer to do so, enabling researchers to study changes in proteins and other molecules in the blood over time; adding additi

Financial Efficiency

• Mission deployment rate: 73.8%; rating input score 74
• Program expense ratio: 79.6%; rating input score 80
• Fundraising efficiency: $4.97 raised per $1 spent on fundraising; rating input score 14; 14th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.4%; rating input score 94; 25th percentile among comparable filings
• Pay-setting controls: 4 of 6 controls in place; rating input score 67
  • Compensation committee: Pass
  • Independent consultant: Missing
  • Other Form 990s reviewed: Pass
  • 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: 99.3%; rating input score 99; 44th 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: 9 of 9 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: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 6.9%; rating input score 48; 48th percentile among comparable filings
• Total-asset coverage ratio: 1.97; rating input score 57; 57th percentile among comparable filings
• Liabilities to assets ratio: 0.11; rating input score 47; 47th percentile among comparable filings
• Officer compensation ratio: 15%; rating input score 22; 22nd percentile among comparable filings

Growth

• Program expense growth: 7.7% per year; rating input score 100; 51st percentile among comparable filings
• Revenue growth: 8.2% per year; rating input score 100; 58th percentile among comparable filings
• Asset growth: 6.3% per year; rating input score 100; 40th percentile among comparable filings