National Tuberous Sclerosis Association
The National Tuberous Sclerosis Association, doing business as the TSC Alliance, is a public charity based in Silver Spring, Maryland. It supports research, care, advocacy, and lifelong support for people affected by tuberous sclerosis complex (TSC), including research grants and postdoctoral fellowships for early-career researchers.
National Tuberous Sclerosis Association at a glance
In short: National Tuberous Sclerosis Association gave $702K across 11 grants in 2025 (avg $64K), top state Massachusetts. 18% of 2025 grantees were new. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $701,695
- +18.1% vs 2024
- Grants made (2025)
- 11
- +22.2% vs 2024
- Average grant
- $63,790
- -3.4% vs 2024
- Median grant
- $56,250
- Total assets
- $18,024,174
- +4.5% vs 2024
- New grantees (estimate)
- 18% first-time grantees (2 of 11, 2025; small sample)
- Primary geography
- Massachusetts (46% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated October 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to National Tuberous Sclerosis Association
- How to Apply
-
The process begins with a required LOI. Only applicants invited after LOI review may submit a full proposal. The 2026 cycle’s LOI and full-proposal deadlines have passed.
- Review Cycle
- The 2026 LOI was due May 18, 2026. Invited full proposals were due September 8, 2026.
- Deadline
- The 2026 LOI was due May 18, 2026.
- Next open deadline
- December 1, 2026 (Autism Science Foundation Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards)
- Contact
Mailing address: 8737 Colesville Road 400, Silver Spring, MD 20910
Phone: (301) 562-9890
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Open Grants
5 open opportunities from National Tuberous Sclerosis Association
American Skin Association Research Grants
National Tuberous Sclerosis Association
Amount
$15,000
Deadline
Deadline not published
American Skin Association Research Scholar Award
National Tuberous Sclerosis Association
Amount
$60,000
Deadline
Deadline not published
Autism Science Foundation Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards
National Tuberous Sclerosis Association
Amount
Varies
Deadline
Expected ~December
Based on past cycles
Who National Tuberous Sclerosis Association funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was National Organization for Rare Disorders ($150K). Together the top 10 received $683K.
Grant Size Distribution
57 grants across all recorded years
The most common grant size was in the $50–100K range: 25 grants of 57 (44%).
Geographic Focus
Where this funder awards grants
The 2025 grants went to recipients in Massachusetts, Texas, Georgia, Illinois, California, and Ohio. Massachusetts received 46% of grant dollars, Texas 16%, Georgia 14%, Illinois 11%, and California 11%.
Grant Distribution by State
Share of 2025 grant dollars across all 11 itemized grants.
States
Cities
Is National Tuberous Sclerosis Association open to new grantees?
18%
first-time grantees, 2025
In 2025, 2 of 11 grantees (18%) were first-time recipients. With only 11 grantees, that is a small sample: one grantee more or less moves the share by about 9 points. First grants averaged $19K; repeat grants $74K. How we count
Medians: $19K first-time, $75K repeat.
- 73% of 2025 grantees were also funded in 2024. Method
- Giving held roughly steady from 2022 to 2025 (+7%). Method
Estimate from itemized grant lists in IRS Form 990 filings (2019–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2025, annual grant giving ranged from $474K (2019) to $835K (2021). In 2025 it made 11 grants totaling $702K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| National Organization for Rare Disorders Woburn, MA | TSC Travel and Lodging Assistance Program | $150,000 |
| Boston Children's Hospital Boston, MA | Research Grant | $100,579 |
| Emory University Atlanta, GA | Research Grant | $75,000 |
| Northwestern University Evanston, IL | Research Grant | $75,000 |
| University of Massachusetts Worcester, MA | Research Grant | $75,000 |
| Baylor College of Medicine Dallas, TX | Research Grant | $56,250 |
| University of California Irvine Irvine, CA | Research Grant | $56,250 |
| University of Texas Dallas Richardson, TX | Research Grant | $56,250 |
| Clemson University Atlanta, GA | Research Grant | $19,866 |
| The Regents of the University of California Los Angeles, CA | Research Grant | $18,750 |
Ready to take the next step with National Tuberous Sclerosis Association?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $18,024,174 | $9,807,320 | $9,133,802 | $701,695 | 11 | $23,937 |
| 2024 | $17,254,701 | $10,000,895 | $8,660,018 | $594,369 | 9 | $52,809 |
| 2023 | $16,085,768 | $10,016,383 | $8,467,648 | $632,808 | 13 | $36,732 |
| 2022 | $14,827,937 | $8,909,542 | $8,063,684 | $657,611 | 12 | $2,636 |
| 2021 | $14,046,866 | $9,015,987 | $6,869,562 | $834,756 | 12 | $5,670 |
| 2020 | $11,657,873 | $5,128,164 | $5,422,190 | $623,402 | 13 | $11,770 |
| 2019 | $10,351,316 | $6,716,234 | $5,639,335 | $474,302 | 9 | $27,826 |
Research compiled by Grantable AI from public sources. Last updated October 2026.
Mission & Focus Areas
The organization’s stated mission is to improve quality of life for everyone affected by TSC by catalyzing new treatments, driving research toward a cure, and expanding access to lifelong support.
Its research program supports basic, translational, and clinical research on TSC and fosters collaboration between basic and clinical researchers. The organization also supports research infrastructure, including a natural history database and biosample repository, and a preclinical consortium focused on advancing drug candidates toward clinical testing.
Its 2026 early-stage investigator research grants and postdoctoral fellowships support research relevant to TSC. The Wong Family Foundation Research Award is a two-year award for the most meritorious epilepsy-focused application in the cycle; eligible epilepsy-focused research grant and fellowship candidates are considered automatically.
Among the organizations it supported in 2025, Northwestern University describes its mission as excellent teaching, innovative research, and students’ personal and intellectual growth in a diverse academic community. Emory University describes its mission as creating, preserving, teaching, and applying knowledge in the service of humanity. Cincinnati Children’s Hospital Medical Center describes its mission as improving child health and transforming care through research, education, and innovation.
Grantmaking
In filing year 2025, the organization reported 11 grants totaling $701,695. Grant amounts ranged from $18,750 to $150,000, with a median of $56,250. The largest award was $150,000 to the National Organization for Rare Disorders for the TSC Travel and Lodging Assistance Program. Research grants included $100,579 to Boston Children’s Hospital and $75,000 each to Emory University, Northwestern University, and the University of Massachusetts.
The organization’s research funding program invests in postdoctoral fellows and early-stage investigators. Its website reported three awards to those groups in 2025 and anticipated three or four awards in 2026, depending on merit, requested budgets, and available funds. The 2026 cycle requires a letter of intent (LOI); LOIs are peer-reviewed, and selected applicants are invited to submit full proposals. Maximum project duration is two years, and maximum total costs are $150,000, including direct and indirect costs. Indirect costs are capped at 10% of total costs, and up to $2,000 total may be budgeted for the applicant’s professional-development travel.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Paul Waxlax as board chair, Brittany Smith as vice chair, Mark Spotts as treasurer, and Kristi Lengyel as secretary. It also lists Derek Bauer, Julie Blum, Angelique Bordey, Frances Briones, Chip Burkhalter, and Lisa Carlton as directors.
National Tuberous Sclerosis Association is led by Kari Luther Rosbeck, President & CEO on every filing since 2019; 7 of 37 officers listed in 2025 are compensated.
Officers on the 2025 filing
Kari Luther Rosbeck
President & CEO
On filings since 2019
54 hrs/week
$195K (2019) → $255K (2025)
Paul Waxlax
Board Chair
Treasurer → Vice Chair, 2023
Vice Chair → Board Chair, 2025
On filings since 2020
5 hrs/week
No compensation reported
Gail Saunders
Director & Community Programs
New on the 2025 filing
45 hrs/week
$103K (2025)
Heather Radtke
Director & Clinical Programs
New on the 2025 filing
45 hrs/week
$120K (2025)
Sara Chieffo
Director
Board Member → Director, 2025
On filings since 2019
2 hrs/week
No compensation reported
Julie Blum
Director
Board Member → Director, 2024
On filings since 2020
2 hrs/week
No compensation reported
Laura Marks
Director
Secretary → Board Member, 2022
Board Member → Director, 2024
On filings since 2020
2 hrs/week
No compensation reported
Mark Carroll
Director
Board Member → Director, 2024
On filings since 2020
2 hrs/week
No compensation reported
Vanessa Vazquez
Director
Board Member → Director, 2024
On filings since 2020
2 hrs/week
No compensation reported
Derek Bauer
Director
Board Member → Director, 2024
On filings since 2021
2 hrs/week
No compensation reported
Jessica Krefting
Director
Secretary → Board Member, 2023
Board Member → Director, 2024
On filings since 2021
2 hrs/week
No compensation reported
Tanjala Gipson
Director
Board Member → Director, 2024
On filings since 2021
2 hrs/week
No compensation reported
Juian Gangolli
Director
Board Member → Director, 2024
On filings since 2022
2 hrs/week
No compensation reported
Lesley Holmes
Director
Board Member → Secretary, 2023
Secretary → Director, 2025
On filings since 2022
2 hrs/week
No compensation reported
Lisa Carlton
Director
Board Member → Director, 2024
On filings since 2022
2 hrs/week
No compensation reported
Patroski Lawson
Director
Board Member → Director, 2024
On filings since 2022
2 hrs/week
No compensation reported
Chip Burkhalter
Director
Board Member → Director, 2024
On filings since 2023
2 hrs/week
No compensation reported
Jonathan Goldstein
Director
Board Member → Director, 2024
On filings since 2023
2 hrs/week
No compensation reported
Shafali Jeste
Director
Board Member → Director, 2024
On filings since 2023
2 hrs/week
No compensation reported
Andrew Sperling
Director
On filings since 2024
2 hrs/week
No compensation reported
Frances Briones
Director
On filings since 2024
2 hrs/week
No compensation reported
Andrew Duffy
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Angelique Bordey
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Bill Joseph
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Danielle Clark
Director
New on the 2025 filing
2 hrs/week
No compensation reported
David Johnston
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Jim O'Heir
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Lisa Henske
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Noor Panjwani
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Rich Gollub
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Dean Rager-Aguiar
Vice President & Translatio
Director & Preclinical Research → Vice President & Translational Research, 2022
Vice President & Translational Research → Vice President & Translatio, 2024
On filings since 2019
45 hrs/week
$142K (2019) → $192K (2025)
Lisa M. Moss
Vice President & Donor Rela
Senior Director & Donor Relations → Vice President & Donor Relations, 2022
Vice President & Donor Relations → Vice President & Donor Rela, 2024
On filings since 2019
45 hrs/week
$105K (2019) → $136K (2025)
Steven L. Roberds
Chief Scientific Officer
On filings since 2019
45 hrs/week
$210K (2019) → $256K (2025)
Jamie Saylor
Chief Financial Officer
New on the 2025 filing
45 hrs/week
$143K (2025)
Brittany Smith
Vice Chair
Board Member → Treasurer, 2023
Treasurer → Vice Chair, 2025
On filings since 2022
5 hrs/week
No compensation reported
Kristi Lengyel
Secretary
Board Member → Director, 2024
Director → Secretary, 2025
On filings since 2022
2 hrs/week
No compensation reported
Mark Spotts
Treasurer
Director → Treasurer, 2025
On filings since 2024
5 hrs/week
No compensation reported
Former officers (35)
- Former: Darcy A. Krueger (2019–2024) — Director
- Former: Heather Lens (2019–2024) — Director
- Former: Jaye D. Isham (2019–2024) — Chief Outreach Officer
- Former: Matt Bolger (2019–2024) — Director
- Former: Mustafa Sahin (2019–2024) — Director
- Former: Sean Shillinger (2019–2024) — Director
- Former: Steven Goldstein (2019–2024) — Director
- Former: William Joseph (2020–2024) — Board Chair
- Former: Cynthia Arcuri (2022–2024) — Chief Financial Officer
- Former: Dana Holinka (2019–2023) — Board Member
- Former: David Coit (2019–2023) — Board Member
- Former: Diane McSwain (2019–2023) — Board Member
- Former: Peter Crino (2019–2023) — Immediate Past Chair
- Former: Rob Grandia (2019–2023) — Board Member
- Former: Tara Zimmerman (2019–2023) — Board Member
- Former: Ashley Pounders (2021–2023) — Director of Medical Affairs
- Former: Margaret Cox (2019–2022) — Board Member
- Former: Richard Gollub (2019–2022) — Chief Financial Officer
- Former: April Cooper (2020–2022) — Vice President & Community Programs
- Former: Edward Burkhalter (2021–2022) — Board Member
- Former: Bonnie Hogue Duffy (2019–2021) — Board Member
- Former: Chris Russell (2019–2021) — Immediate Past Chair
- Former: Jim Maginn (2019–2021) — Board Member
- Former: Matthew Simonian (2019–2021) — Board Member
- Former: Robert Grandia (2021) — Board Member
- Former: Timothy Dills (2021) — Board Member
- Former: Cassandra Carroll (2019–2020) — Board Member
- Former: Judy Shoulak (2019–2020) — Board Member
- Former: Tim Dills (2019–2020) — Immediate Past Chair
- Former: Adolfo Orive (2019) — Board Member
- Former: Beth Dean (2019) — Chair
- Former: Brendan D. Manning PhD (2019) — Board Member
- Former: Darren Miles (2019) — Treasurer
- Former: John J. Bissler MD (2019) — Board Member
- Former: Tom Gwinn (2019) — Board Member
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $256K, to Steven Roberds (Chief Scientific Officer). 7 officers or directors reported compensation on that filing.
Frequently asked questions about National Tuberous Sclerosis Association
How much does National Tuberous Sclerosis Association give each year?
National Tuberous Sclerosis Association gave $702K across 11 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $594K across 9 grants.
What is National Tuberous Sclerosis Association's typical grant size?
National Tuberous Sclerosis Association's median grant in 2025 was $56,250, and its average grant was $63,790, across 11 grants on its 2025 IRS Form 990. Organizations receiving their first grant from National Tuberous Sclerosis Association that year got $19K on average.
Where does National Tuberous Sclerosis Association give grants?
National Tuberous Sclerosis Association's top state is Massachusetts, with 46% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Texas (16%) and Georgia (14%). The most frequent recipient cities were Atlanta, GA (2 grants).
Does National Tuberous Sclerosis Association give general operating support?
Not in 2025: none of the 11 grants with a stated purpose on National Tuberous Sclerosis Association's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Research Grant" (10 grants).
Who are National Tuberous Sclerosis Association's largest grantees?
National Tuberous Sclerosis Association's largest 2025 grantees include National Organization for Rare Disorders ($150,000), Boston Children's Hospital ($100,579) and Emory University ($75,000), according to its 2025 IRS Form 990. Together they received 46% of its itemized 2025 grant dollars.
How large is National Tuberous Sclerosis Association?
National Tuberous Sclerosis Association reported $18.0M in total assets on its 2025 IRS Form 990. Its revenue that year was $9.8M.
What does National Tuberous Sclerosis Association fund?
The organization’s stated mission is to improve quality of life for everyone affected by TSC by catalyzing new treatments, driving research toward a cure, and expanding access to lifelong support. See mission & focus areas ↑
How do I apply for a grant from National Tuberous Sclerosis Association?
The process begins with a required LOI. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is National Tuberous Sclerosis Association's EIN?
National Tuberous Sclerosis Association's EIN (Employer Identification Number) is 95-3018799. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated October 2026. Sourced from IRS Form 990 filings. Research dossier generated October 2026.
Data update history
(8)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2019 (received by the IRS April 13, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS April 12, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS April 11, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS September 24, 2024)
- Updated Form 990 for fiscal year 2023 (received by the IRS September 24, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS April 11, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS April 23, 2026)
- IRS filings on file for fiscal years 2019–2025
Live grants for the work National Tuberous Sclerosis Association funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in National Tuberous Sclerosis Association's focus areas in our free grants database
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Cite this profile
Grantable. (2026). National Tuberous Sclerosis Association funder profile. GrantGraph. Retrieved October 21, 2026, from https://grantable.co/funders/national-tuberous-sclerosis-association-morg_a185bad36ff544b185c6a645e3c69c31
BibTeX
@misc{grantable_953018799_2026,
author = {{Grantable}},
title = {{National Tuberous Sclerosis Association funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/national-tuberous-sclerosis-association-morg_a185bad36ff544b185c6a645e3c69c31},
note = {Accessed 2026-10-21. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from National Tuberous Sclerosis Association's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
National Tuberous Sclerosis Association down — hundreds of funders to go?