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Ctx Alliance NFP

EIN 87-1964096 · Lansdale, PA

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

LegitimacyPassesRegistration and standingFinancial healthNot ratedToo small or too little detailGovernanceNot ratedThe short tax form does not cover thisImpact evidenceDescribes programsHow well its results are evidenced

What it says it does

Education advocacy and promote research for CTX

Income
$63,813
Spending
$81,750
Reserves
3.2 months of spending
Largest source of income
donations and private grants, 100%
Highest pay
$69,294, executive director

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

Financial health

We do not score finances when yearly spending is very small or the return has too little detail. The ratios stop meaning much at that size.

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

Governance

This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.

Source: Form 990EZ 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 (11)
  1. $13,407 spent. Sponsored and organized CTX sessions at the ULF Scientific Symposium and Family Conference in Itasca IL in June 2025. Thirty one patients caregivers and professionals attended including seven participants who joined remotely. Mirum Pharmaceuticals was recognized for FDA approval of Ctexli for CTX treatment. A South American physician spoke about challenges accessing the drug internationally.
  2. $825 spent. Initiated a campaign for the first ever CTX Awareness Day - September 17 2025. Volunteers that live in specific states filled out forms to officially recognize CTX awareness day. Our website traffic doubled as a result of this campaign. This campaign will continue in 2026.
  3. $24,598 spent. The book Cerebrotendinous Xanthomatosis - A Treatable Rare Neurometabolic Disorder was published in 2025. This book was written by the medical professionals from around the globe that attended our first international meeting in Israel in August 2023. The book was truly a labor of love that took much collaboration with many medical professionals and administrators to get it across the finish line!
  4. $166 spent. Website maintenance for our CTXAlliance. org website
  5. $78 spent. State licensing fees
  6. $457 spent. Bank and credit card fees
  7. $609 spent. Software programs & updates
  8. $4,763 spent. A representative attended the 2025 GLIA Scientific Meeting and Advocacy Workshop in 2025. One of our Medical and Scientific Advisory Board members gave a presentation on CTX during one of the sessions. The goal of attending this meeting was to network with other rare disease advocates and learn as much as we can about the newborn screening approval process.
  9. $9,522 spent. We sent a representative to the American College of Medical Genetics Meeting in March 2025 to set up and man a booth. The goal was to educate medical professionals about CTX as well as the need for Newborn Screening.
  10. $12,341 spent. Organized and held the CTX International Workshop Series meeting in Kyoto Japan on September 1 2025. There were around 80 medical professionals registered - 42 in person and the rest remote. The goal of the session was to drive towards specific recommendations on disease scoring and input for a patient registry. A strong community connection was forged with the Japanese CTX community.
  11. $165 spent. Hosted a webinar in October 2025 with Mirum. Mirum explained the new process for obtaining the new FDA-approved medication Ctexli.

Source: Form 990EZ 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 September 7, 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 September 30, 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 September 10, 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 September 7, 2026.

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

    Recognized by the IRS since October 2021.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 October 7, 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.