Nonprofit · EIN 87-1964096
CTX ALLIANCE NFP
Tax-exempt · LANSDALE, PA 19446
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990-EZ | $63,813 | $81,750 | -$17,937 | $22,038 | – | $22,038 |
| December 31, 2024 | 990-EZ | $85,546 | $66,821 | $18,725 | $39,975 | – | $39,975 |
| December 31, 2023 | 990-EZ | $116,435 | $137,329 | -$20,894 | $21,250 | – | $21,250 |
Financial details: 990-EZ for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $63,813
- Program service revenue
- $0
- Investment income
- $0
Expenses
- Compensation of officers, directors and key employees
- $69,294
- Salaries, compensation and benefits (total)
- $0
- Professional fees and payments to contractors
- $69,942
- Other expenses
- $11,808
- Program services (functional)
- $66,931
Balance sheet and other
- Total assets, start of year
- $39,975
- Total assets, end of year
- $22,038
- Total liabilities, end of year
- –
- Net assets, end of year
- $22,038
- Cash, savings and investments
- $22,038
- Gross receipts
- $63,813
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990-EZ for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Jean Pickford | Executive Director | 15 | $69,294 |
| Bobbi Blanchard | Co-President | 1 | $0 |
| George Bryce | Co-President | 1 | $0 |
| Andrea DeBarber PhD | Co-Vice President | 2 | $0 |
| Robert Steiner MD | Co-Vice President | 0.5 | $0 |
| Shawn Laurie | Treasurer | 1 | $0 |
| Neel Odedara | Secretary | 1 | $0 |
| Shannon DeLaMar | Board Member | 0.5 | $0 |
| Hollisa Rosengrant | Board Member | 1 | $0 |
| Jennifer Rossen | Board Member | 1 | $0 |
| John Wolf | Board Member | 0.5 | $0 |
| Abbey Cook | Board Member | 20 | $0 |
990-EZ for the year ended December 31, 2024: 12 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Jean Pickford | Executive Director | 12 | $51,480 |
| Bobbi Blanchard | Co-President | 1 | $0 |
| George Bryce | Co-President | 1 | $0 |
| Andrea DeBarber PhD | Co-Vice President | 2 | $0 |
| Robert Steiner MD | Co-Vice President | 0.5 | $0 |
| Shawn Laurie | Treasurer | 1 | $0 |
| Neel Odedara | Secretary | 0.5 | $0 |
| Shannon DeLaMar | Board Member | 0.5 | $0 |
| Hollisa Rosengrant | Board Member | 0.5 | $0 |
| Jennifer Rossen | Board Member | 0.5 | $0 |
| John Wolf | Board Member | 0.5 | $0 |
| Abbey Cook | Board Member | 1 | $0 |
990-EZ for the year ended December 31, 2023: 11 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Jean Pickford | Executive Director | 12 | $52,521 |
| Bobbi Blanchard | Co-President | 1 | $0 |
| George Bryce | Co-President | 1 | $0 |
| Andrea DeBarber PhD | Co-Vice President | 2 | $0 |
| Robert Steiner MD | Co-Vice President | 0.5 | $0 |
| Shawn Laurie | Treasurer | 1 | $0 |
| Neel Odedara | Secretary | 0.5 | $0 |
| Shannon DeLaMar | Board Member | 0.5 | $0 |
| Hollisa Rosengrant | Board Member | 0.5 | $0 |
| Sue Stewart | Board Member | 0.5 | $0 |
| John Wolf | Board Member | 0.5 | $0 |
Address and contacts
- Address (IRS master file)
- 454 PRINTER WAY, LANSDALE, PA 19446-4035
- In care of
- % JEAN PICKFORD
- Mailing address (990-N for 2022)
- 454 Printer Way, Lansdale PA 19446
- Principal officer (990-N for 2022)
- Shawn Laurie, 1314 Lowes Farm Ct, Mansfield TX 76063
- Signed the 990-EZ
- Jean Pickford, Executive Director
- Website
- https://ctxalliance.org
Mission
Education advocacy and promote research for CTX
Program accomplishments
- 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.Expenses $13,407
- 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.Expenses $825
- 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!Expenses $24,598
- Website maintenance for our CTXAlliance. org websiteExpenses $166
- State licensing feesExpenses $78
- Bank and credit card feesExpenses $457
- Software programs & updatesExpenses $609
- 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.Expenses $4,763
- 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.Expenses $9,522
- 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.Expenses $12,341
- Hosted a webinar in October 2025 with Mirum. Mirum explained the new process for obtaining the new FDA-approved medication Ctexli.Expenses $165
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990-EZ on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990-EZ on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990-EZ on file |
IRS record
- EIN
- 87-1964096
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2021
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G01)
- Assets (IRS master file)
- $22,038
- Income (IRS master file)
- $63,813
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990-EZ | December 2025 | $63,813 | $81,750 | $22,038 | IRS |
| 990-EZ | December 2024 | $85,546 | $66,821 | $39,975 | IRS |
| 990-EZ | December 2023 | $116,435 | $137,329 | $21,250 | XML |
| 990-N for 2022 Officer: Shawn Laurie | December 31, 2022 | ≤ $50,000 receipts | – | – | e-Postcard |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 87-1964096).
Questions about CTX ALLIANCE NFP
- What is the EIN of CTX ALLIANCE NFP?
- The employer identification number (EIN) of CTX ALLIANCE NFP is 87-1964096.
- Is CTX ALLIANCE NFP tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2021.
- Are donations to CTX ALLIANCE NFP tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does CTX ALLIANCE NFP file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of CTX ALLIANCE NFP due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did CTX ALLIANCE NFP last file with the IRS?
- The latest return in the IRS public files is the 990-EZ for the year ended December 2025.
- Who is the principal officer of CTX ALLIANCE NFP?
- The 990-N for 2022 names Shawn Laurie.
- Who are the officers and directors of CTX ALLIANCE NFP?
- The 990-EZ for the year ended December 31, 2025 lists 12 people; 1 received compensation from the organization, the highest $69,294 (Jean Pickford, Executive Director).
- How much revenue does CTX ALLIANCE NFP have?
- On its 990-EZ for the year ended December 31, 2025 it reported revenue of $63,813, expenses of $81,750 and total assets of $22,038 at year end.
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