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Pennsylvania · Nonprofit

CTX ALLIANCE NFP

CTX ALLIANCE NFP (Pennsylvania) receives grants from 1 organization whose IRS filings report $5,709 to it, the largest being NETWORK FOR GOOD ($5,709). 0 of them have funded it in more than one year, and 100% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.

Revenue FY2025
$64k
Funders on record
1
Grants received
$6k
Net assets
$22k
0/1 repeat funderspeak grant-dependency 5%
01What it does

What Ctx Alliance Nfp does

Mission

Education advocacy and promote research for CTX

As stated on its FY2025 Form 990-EZ.

Programs

  1. 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.

    $13,407 spent
    20% of program spending

  2. 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.

    $825 spent
    1% of program spending

  3. 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!

    $24,598 spent
    37% of program spending

  4. Website maintenance for our CTXAlliance. org website

    $166 spent
    0% of program spending

  5. State licensing fees

    $78 spent
    0% of program spending

  6. Bank and credit card fees

    $457 spent
    1% of program spending

  7. Software programs & updates

    $609 spent
    1% of program spending

  8. 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.

    $4,763 spent
    7% of program spending

  9. 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.

    $9,522 spent
    14% of program spending

  10. 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.

    $12,341 spent
    18% of program spending

  11. Hosted a webinar in October 2025 with Mirum. Mirum explained the new process for obtaining the new FDA-approved medication Ctexli.

    $165 spent
    0% of program spending

The 11 programs described on its FY2025 Form 990-EZ. Program spending in total: $66,931.

02The organization over time

The organization over time

Each line starts at 100 in 2023, so what you read is the shape rather than the size: 150 means half as much again as 2023, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.

100 = 20232023 Revenue 100 ($116k) Expenses 100 ($137k) Net assets 100 ($21k)2024 Revenue 73 ($86k) Expenses 49 ($67k) Net assets 188 ($40k)2025 Revenue 55 ($64k) Expenses 60 ($82k) Net assets 104 ($22k)
202320242025
Revenue (55)Expenses (60)Net assets (104)Peer revenue range

Balance sheet

Total assets at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $21k to $40k (+88%).

$21k
$40k
$22k
202320242025
Total assets

How it's funded, over time

Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.

2023
2024
2025
ContributionsProgram revenueInvestmentOther

100% of CTX ALLIANCE NFP’s revenue is contributions — more reliant on donations than three-quarters of its peers (100% for the typical peer).

This organization
Typical peer · 12,214 orgs

Surplus & reserves

Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 3 reported years ran a deficit.

−$21k
’23
$19k
’24
−$18k
’25

Leadership and staff

Chief executive

Jean Pickford

Executive Director

As listed on its FY2025 Form 990-EZ.

03Who funds it

Who funds it, year by year

Grant support over time, funder by funder — shade shows the grant size each year.

Funder
'23
total
funders
1

1 of 1 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 100% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.

From the IRS filings of CTX ALLIANCE NFP’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.

Where its funders are

100% of CTX ALLIANCE NFP's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Too little is directly attributable to place on a map.

Funder states come from each funder’s own filing. $6k arriving through sponsors registered in 1 state is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.

04Its place in the field

Against its field

CTX ALLIANCE NFP's revenue fell 45% between 2023 and 2025.

Operating margin−28% · bottom quartile
Revenue growth (annualized)−26% · below the median

this organization peer median middle 50% of peers· 6,360 health nonprofits under $100k, FY2025

Organizations like CTX ALLIANCE NFP

Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.

In Pennsylvania

Charcot-Marie-Tooth Association71%C & S Patient Education Foundation70%National Tay-Sachs and Allied Diseases Association of Delaware Va69%Sickle Gene International Foundation68%The Association for Frontotemporal Degeneration67%Crescent Foundation67%Bardet Biedl Syndrome Foundation66%International Scty for the Advancement of Clinical Magnetoencephalography66%

Nationally

Mld Foundation74%Celiac Disease Foundation73%Autoinflammatory Alliance Inc73%Spata Foundation Inc71%CACNA1A Foundation71%The Children's Rare Disorders Fund71%Sca27b Ataxia Foundation71%Charcot-Marie-Tooth Association71%
05Profile & governance

Read directly from this organization’s own Form 990, as neutral context.

Footprint & structure

Files a return copy in 1 state

PA

Screen this organization

A dated, signed PDF of the compliance screen for CTX ALLIANCE NFP: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.

A paid feature, included from the $75 plan up. Sign in to download.

Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf

Questions and answers

Who funds CTX ALLIANCE NFP?
CTX ALLIANCE NFP (Pennsylvania) receives grants from 1 organization whose IRS filings report $5,709 to it, the largest being NETWORK FOR GOOD ($5,709). 0 of them have funded it in more than one year, and 100% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
How many funders does CTX ALLIANCE NFP have?
IRS filings report 1 organization giving $5,709 in grants to CTX ALLIANCE NFP.
Who is the largest funder of CTX ALLIANCE NFP?
NETWORK FOR GOOD is the largest funder on record, with $5,709 in grants. The full list of funders is on this page.
How can an organization like CTX ALLIANCE NFP find more funders?
Start with the funders already giving here, then look at the foundations that back similar organizations in Pennsylvania. The funding by cause and by state pages list the largest funders for a given area and how to approach them.

Play a game about who funds Ctx Alliance Nfp →

These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2023–2025), and the filings of 1 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing