Cadasil Association
Nonprofit profile at a glance
- EIN
- 455242623
- IRS 990 coverage
- 2022–2025
- Forms available
- Form 990 2025, Form 990-EZ 2021, Form 990-N 2020
- Location
- Edina, MN, USA
- Phone
- 6128164552
- Rating
- 74
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases
Reported finances
- Revenue
- $257,055
- Expenses
- $107,475
- Assets
- $394,057
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
6 people listed
Executive titles in this filing
- BERTRAM KASISKE (PRESIDENT)
People named in this filing
- VINITA BAHL (TRUSTEE)
- KATHY SIEGEL (TRUSTEE)
- CHERYL GIBSON (TREASURER)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The mission of curecadasil is to raise awareness of cadasil, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We are dedicated to helping all touched by cadasil, improving education available on cadasil and promote and support research for this rare disease
What it reported doing in 2025
Cadasil is an hereditary small vessel disease caused by mutations in the notch3 gene. These mutations lead to progressive changes in the small brain arteries and reduced blood flow to the brain. We aim to share these cadasil vessel-on-chip with the international cadasil research community to promote cadasil research. We aim to unite patients and the medical community toward the common goal of treatments and ultimately a cure for this rare genetic disease, by promoting communication, advocacy, research, and education. For the year ended december 31, 2025 the following care programs and activities were operated: communication -scientific advisory board (sab) became fully operational and members were selected to review mdbr grant applications -held the third annual 2025 patient-investigator meeting that brought patients, family members, and caregivers together with investigators in an in-person meeting -provided on-going patient and family support by answering questions sent to us online and at meetings and connecting patients to physicians who treat patients with cadasil advocacy -provided letters of support for studies in cadasil research -continued on-boarding of the "cadasil community natural history study" with the national organization of rare disorders (nord) -advising clinical investigators and supporting the recruitment of participants for 3 observational studies being conducted in the united states: - the cadasil consortium national institutes of health (nih) study - the national heart lung and blood institute/nih cadasil study - the czi-sponsored cadasil study at mt. Sinai medical center -hosting a monthly meeting of key investigators to encourage their collaboration and research in the cadasil disease modeling group educational -conducted webinars for patients and investigators -produced quarterly newsletters to inform the cadasil community -maintaining and improving an educational website (www.curecadasil.org) -promoting an educational brochure for patients and families on cadasil other fundraising activity -coordinated & managed the million dollar bike ride fundraising to provide research donations sponsored by the university of Pennsylvania orphan disease center. All proceeds went to fund a grant for research in cadasil. -represented curecadasil/participated in the czi science in society, nord and neurodegeneration challenge network conferences.
Operating model
- Revenue model
- Donor-supported. 100% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.
Rating breakdown
- Financial Efficiency: 54
- Transparency & Controls: 92
- Accountability: 76
- Sustainability: 82
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 40.3%; rating input score 40
- Program expense ratio: 96.3%; rating input score 96
- Fundraising efficiency: Limited
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; 64th percentile among comparable filings
- Governance controls: 3 of 7 controls in place; rating input score 43
- Conflict-of-interest policy: Pass
- Whistleblower policy: Fail
- Document-retention policy: Fail
- CEO compensation review process: NotApplicable
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Fail
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 58.2%; rating input score 93; 93rd percentile among comparable filings
- Total-asset coverage ratio: 3.67; rating input score 73; 73rd percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings
Growth
- Program expense growth: 33.7% per year; rating input score 100; 91st percentile among comparable filings
- Revenue growth: 22.4% per year; rating input score 100; 88th percentile among comparable filings
- Asset growth: 17% per year; rating input score 100; 79th percentile among comparable filings
Details
- Where the money goes: 40.3% of revenue deployed · 96.3% of spending went to programs
- Governance: 6 of 6 board members independent · 3 of 7 filing controls reported
- Programs: 1 filed program accomplishment · $103K in reported program spending
- Leadership: top reported pay $0 · 6 people listed
- Consistency: 17 of 17 current checks pass
- Schedules: 3 filed schedules · includes major donors
- Filing history: 4 filing years from 2022 to 2025
- Contacts: How to reach this organization
- Money network: Resolved incoming and outgoing counterparties from filed money flows.
- Related organizations: Filed and resolved organization relationships.
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- Moderate — Financial Efficiency: Mission deployment rate scored 40/100.
- Moderate — Accountability: Governance controls: 4 of 7 not reported.