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Cadasil Association

EIN 45-5242623 · Edina, MN

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceGood71 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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

Income
$257,055
Spending
$107,475
Spent on programs
96%
Reserves
25.1 months of spending
Largest source of income
donations and private grants, 100%
Employees
0
Volunteers
30

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 81% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 25.1 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 58% of income.

  • Income trend

    15 of 15

    Income rose 71% on the year before.

  • Spending floor

    15 of 15

    96% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 71 out of 100. Higher than 41% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    6 of 6 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    0 of 10

    Did not give the board a copy of this return before filing it.

  • Independent check of accounts

    12 of 15

    Its accounts were reviewed or compiled by an independent accountant, but not audited.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (1)
  1. $103,486 spent. 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. 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since September 2012.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.