North Carolina · Nonprofit
DUP 15Q ALLIANCE
DUP 15Q ALLIANCE (North Carolina) receives grants from 32 organizations whose IRS filings report $1,628,180 to it, the largest being NETWORK FOR GOOD ($933,871). 16 of them have funded it in more than one year, and 87% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $7.0M
- Funders on record
- 32
- Grants received
- $1.6M
- Net assets
- $6.3M
What Dup 15q Alliance does
Mission
Dup15q alliance empowers individuals living with dup15q syndrome and other related rare diseases to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, supporting families affected by dup15q, and promoting advocacy. As the only patient advocacy grup focused on duplication 15q syndrome, our organization is devoted to advancing research into the syndrome, supporting and promoting the work of scientists, clinicians, and drug development companies in the search for treatments that will alleviate the serious and multiple symptoms of the disorder. We also work to educate families about the syndrome, supporting them with information, and connecting families together from the day they first register with us, so that they can share information and support each other. We offer families opportunities to educate their own friends and families and their communities about duplication 15q syndrome, raising awareness about this rare condition.
As stated on its FY2025 Form 990.
Programs
Scientific and clinical initiatives: the dup15q alliance stands at the forefront of collaborative efforts with stakeholders in academic, clinical, and pharmaceutical spaces to advance research into dup15q syndrome. In 2025, we financially supported partnerships with two different drug development companies working specifically on targeted genetic treatments for dup15q syndrome. Additionally, we also funded and awarded a research grant to an academic lab studying one of the companies' therapeutic candidates. We directed donations to continue a single-site natural history study initiated in 2024, recruiting families to provide data and biological samples in an ongoing study of dup15q and how symptoms change over time. Furthermore, we worked to expand the natural history study to encompass individuals at our family conference, an undertaking that widened the ability for our community to participate in this pivotal study. Our biennial family conference saw over 500 members of the dup15q syndrome community convene in indianapolis to connect and learn about ways the alliance can support them. Some of the main focuses were research, natural history studies, and clinical trials on the…
$708,642 spentof which $600,000 as grants$143,668 earned by the program58% of program spendingEducation and outreach: science symposium this year we co-hosted 275 researchers, clinicians, and industry members from around the world at the dup15q alliance/angelman syndrome foundation science symposium in july. The event included 33 presenters and 11 posters, fostering collaboration, sharing insights, and driving forward new approaches to improving care and advancing research for 15q disorders.
$104,372 spent$30,602 earned by the program9% of program spendingFamily support in 2025, dup15q alliance continued to increase programming to support individuals, their families and caregivers, as well as extended supporters. In the spring, we launched a regional representative program to provide a local contact for dup15q alliance families in the us. We currently have 28 representatives that not only provide support and information, but also hosted multiple local gatherings for dup15q families to meet. These representatives are supported by the family support manager through quarterly virtual meetings and quarterly informative newsletters that help empower the team to assist their families. We funded licensed clinical professional counselor sessions so families in crisis could access help at no cost. Our family support manager personally reaches out to newly diagnosed families, giving them personal support and connecting them to their community. In 2025, we had a record number of parents attending a variety of monthly virtual connection calls that are offered throughout each month. These calls help form friendships among parents with children with dup15q syndrome, and give them a safe space to learn from one another. As a conference year,…
$409,951 spentof which $2,500 as grants34% of program spending
The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $1,222,965.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 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.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2024 to 2025, from $910k to $6.4M (+601%).
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.
Government-grant reliance: 2018 0% · 2019 0% · 2020 0% · 2021 15%. Grants only. Government contracts and fees sit inside program revenue.
94% of DUP 15Q ALLIANCE’s revenue is contributions — more reliant on donations than three-quarters of its peers (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Board chair
Sarah Thacker
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2018 → 2023: the base broadened from 3 funders to 15 funders, grant income rose $126k → $296k.
11 of 32 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 87% 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 DUP 15Q ALLIANCE’s funders (the co-funder graph). Top 30 of 32 funders by total. 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.
How concentrated its funding is
DUP 15Q ALLIANCE leans on a few funders — its largest provides 57% of grant income and the top three 72%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
89% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund DUP 15Q ALLIANCE.
Largest funder’s share by year: 2018 99% · 2019 93% · 2020 68% · 2021 54% · 2022 63% · 2023 74% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. 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.
How long its funders stay
50% of DUP 15Q ALLIANCE's funders are still giving 3 years after their first grant; 50% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
87% of DUP 15Q ALLIANCE'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. Of the $214k that is directly attributable, 100% of it comes from funders outside North Carolina, across 13 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.4M arriving through sponsors registered in 9 states 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.
Against its field
DUP 15Q ALLIANCE runs a healthier operating margin than three-quarters of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like DUP 15Q ALLIANCE
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 North Carolina
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
80% of spending goes to programs.
Governance
Public support
98%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for DUP 15Q ALLIANCE: 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.
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 DUP 15Q ALLIANCE?
- DUP 15Q ALLIANCE (North Carolina) receives grants from 32 organizations whose IRS filings report $1,628,180 to it, the largest being NETWORK FOR GOOD ($933,871). 16 of them have funded it in more than one year, and 87% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does DUP 15Q ALLIANCE have?
- IRS filings report 32 organizations giving $1,628,180 in grants to DUP 15Q ALLIANCE, 16 of which have funded it in more than one year.
- Who is the largest funder of DUP 15Q ALLIANCE?
- NETWORK FOR GOOD is the largest funder on record, with $933,871 in grants. The full list of funders is on this page.
- How can an organization like DUP 15Q ALLIANCE find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in North Carolina. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 32 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 22, 2026. What this page cannot tell you · view filing