Maryland · Nonprofit
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION (Maryland) receives grants from 80 organizations whose IRS filings report $9,237,269 to it, the largest being The Ramesh and Kalpana Bhatia Family Foundation ($2,604,750). 47 of them have funded it in more than one year, and 51% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $9.8M
- Funders on record
- 80
- Grants received
- $9.2M
- Net assets
- $16M
What National Tuberous Sclerosis Association does
Mission
To improve quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support.
As stated on its FY2025 Form 990.
Programs
Research program stimulates and supports basic, translational, and clinical research on the various manifestations of tuberous sclerosis complex (tsc) to further the development of clinical therapies and, ultimately, a cure for tsc. Directed by steven l. Roberds, phd, chief scientific officer, the tsc alliance research program builds and fosters collaborations between basic and clinical researchers by collecting and distributing tsc natural history data and biosamples, through collaborative preclinical and clinical research programs, and by hosting biennial international tsc research conferences.since 1984, the tsc alliance has invested more than $44 million into tsc research projects through grants and contracts: $21.6 million in research grants and postdoctoral fellowships, $6.2 million into the natural history database and biosample repository, $14.3 million into the preclinical consortium, and $2.3 million into the clinical research consortium and clinical research network. Grant and fellowship applications are reviewed in a three-step process: (1) all applications are reviewed by a committee comprised of scientists knowledgeable about the topic area for scientific merit and…
$5,592,767 spentof which $1,040,281 as grants$2,424,150 earned by the program77% of program spendingSupport services is dedicated to supporting individuals and families affected by tsc through outreach programs, support services, improved medical access, and educational resources. In 2025, the tsc alliance continued to advance its community support model through the community leadership hub, a platform to connect, manage, and recognize its 147 active volunteers. Across 14 community regions, these volunteers sustain a coordinated network that strengthens support for individuals and families affected by tsc.the community programs team invested more than 1,443 training hours to our leaders, to ensure they were well equipped to support and empower the tsc community. As a result, we provided 6,613 peer-to-peer support engagements and facilitated 102 school meetings, which involved tsc 101 training and iep consultations. In addition, six "ask an advocate" webinars attracted 490 registrants. The community programs team collaborated with key staff to host the 2025 transition webinar series with 268 live attendees and garnered 267 recorded views as of december 31, 2025. The tsc alliance hosted three educational tsc regional conferences in waltham, ma, iowa city, ia (with the opportunity…
$941,019 spent13% of program spendingPublic health education increases awareness of tsc throughout the general public to broaden the scope of support and understanding beyond tsc individuals and their families; these efforts also work to help reach the undiagnosed and newly diagnosed. During 2025, the tsc alliance produced two issues of its national magazine, perspective, which is mailed to approximately 18,500 constituents as well as posted on the website. The tsc alliance's podcast series, called tsc now, produced two episodes with 1,970 total listens. Six issues of the electronic tsc matters newsletter were distributed to 16,227 recipients. The tsc alliance's website increases awareness and provides extensive education through a monthly average of 25,303 page views. The tsc alliance also relies heavily on social media to educate constituents and promote new resources and events. Its private facebook tsc discussion group boasts more than 11,737 members from around the world, while its facebook page has 12,128 followers, linkedin has 2,797 followers, instagram has 4,436 followers and its youtube channel has 9,010 subscribers. To increase public awareness, the tsc alliance participated in the 13th annual tsc global…
$418,184 spent6% of program spendingGovernment relations efforts focus on increasing federal and state appropriations for tsc research, raising awareness, and collaborating with government partners to drive tsc research forward and improve clinical care and treatment options for individuals with tsc. On the state level, the tsc alliance advocated for state funding for tsc centers in alabama, missouri, and maryland, resulting in at least $1.275 million in state appropriations. The 2025 march on capitol hill was held on march 5 with congressional meetings taking place through mid-march. More than 130 people participated in over 367 in-person and virtual meetings. Our house dear colleague letter for fy26 was co-sponsored by representatives fitzpatrick (r-pa) and raskin (d-md) and closed with 163 signers. The senate dear colleague letter was co-sponsored by senators cramer (r-nd) and heinrich (d-nm) and closed with 35 signers.congress passed a continuing resolution for fy25 that included a 57% cut to the congressionally directed medical research program (cdmrp). This cut was not made uniformly across all cdmrps and unfortunately resulted in no funding allocation to the tscrp in fy25 which ended september 30, 2025.…
$315,712 spent4% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $7,267,682.
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 2020 to 2021, from $12M to $14M (+20%).
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: 2020 7%. Grants only. Government contracts and fees sit inside program revenue.
63% of NATIONAL TUBEROUS SCLEROSIS ASSOCIATION’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 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.
Chief executive
Kari Luther Rosbeck
President & CEO
Board chair
Paul Waxlax
Board chair
As listed on its FY2025 Form 990.
The chief executive listed changed between the FY2017 and FY2018 filings.
Who funds it, year by year
2017 → 2023: the base broadened from 11 funders to 32 funders, grant income rose $293k → $3.4M.
25 of 80 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 51% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
Left out of every figure on this page: $2.6M from one payer (the payer shares this organization's board, largest Tsc Alliance Endowment Fund Inc). These are real filings, and they are not money NATIONAL TUBEROUS SCLEROSIS ASSOCIATION raised.
From the IRS filings of NATIONAL TUBEROUS SCLEROSIS ASSOCIATION’s funders (the co-funder graph). Top 30 of 80 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
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION has a broad base — no single funder exceeds 28% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
61% 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 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION.
Largest funder’s share by year: 2017 51% · 2018 29% · 2019 22% · 2020 32% · 2021 33% · 2022 20% · 2023 69% — growing more concentrated.
“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
54% of NATIONAL TUBEROUS SCLEROSIS ASSOCIATION's funders are still giving 3 years after their first grant; 59% 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
51% of NATIONAL TUBEROUS SCLEROSIS ASSOCIATION'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 $4.6M that is directly attributable, 100% of it comes from funders outside Maryland, across 24 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $4.7M arriving through sponsors registered in 17 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
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION runs a healthier operating margin than half of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Government funding NATIONAL TUBEROUS SCLEROSIS ASSOCIATION receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $133k on record.
- Department of Health and Human Services$133k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like NATIONAL TUBEROUS SCLEROSIS ASSOCIATION
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 Maryland
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
79%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 27 states
Part of a family of 1 related entity
- Tsc Alliance Endowment Fund Inc · exempt
Screen this organization
A dated, signed PDF of the compliance screen for NATIONAL TUBEROUS SCLEROSIS ASSOCIATION: 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 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION?
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION (Maryland) receives grants from 80 organizations whose IRS filings report $9,237,269 to it, the largest being The Ramesh and Kalpana Bhatia Family Foundation ($2,604,750). 47 of them have funded it in more than one year, and 51% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does NATIONAL TUBEROUS SCLEROSIS ASSOCIATION have?
- IRS filings report 80 organizations giving $9,237,269 in grants to NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, 47 of which have funded it in more than one year.
- Who is the largest funder of NATIONAL TUBEROUS SCLEROSIS ASSOCIATION?
- The Ramesh and Kalpana Bhatia Family Foundation is the largest funder on record, with $2,604,750 in grants. The full list of funders is on this page.
- How can an organization like NATIONAL TUBEROUS SCLEROSIS ASSOCIATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Maryland. 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 80 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