National Tuberous Sclerosis Association
NATIONAL TUBEROUS SCLEROSIS is a public charity based in Silver Spring, Maryland, that supports research related to tuberous sclerosis complex (TSC). The organization, which operates as the TSC Alliance, also works to improve quality of life for people affected by TSC through research, treatment development, and lifelong support.
Key facts about National Tuberous Sclerosis Association
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.
- EIN
- 95-3018799
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $701,695
- Grants made (2025)
- 11
- Average grant
- $63,790
- Median grant
- $56,250
- New grantees (estimate)
- 18% first-time grantees (2 of 11, 2025)
- Total assets
- $18,024,174
- Primary geography
- Massachusetts (46% of itemized 2025 grant dollars)
- Next open deadline
- December 1, 2026 (Autism Science Foundation Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards)
Data from IRS Form 990, 2025; updated September 2026. New grantees are estimated by matching recipient names across years (methodology).
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$18.0M
+4.5% YoY
Annual Giving
$702K
+18.1% YoY
Grant Count
11
+22.2% YoY
Avg Grant Size
$64K
-3.4% YoY
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. 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.
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 encourages collaboration between basic and clinical researchers.
The 2025 grants included research awards to universities and hospitals, and travel and lodging assistance through the National Organization for Rare Disorders. The grantees’ stated missions illustrate the range of supported organizations: Emory University says it creates, preserves, teaches, and applies knowledge in the service of humanity; Northwestern University emphasizes teaching, innovative research, and students’ personal and intellectual growth; and Baylor College of Medicine describes its commitment to advancing human health through patient care, research, education, and community services.
Grantmaking
In filing year 2025, the organization made 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 a 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.
How to Apply
applicants submit a Letter of Intent (LOI), which is peer-reviewed; a subset are invited to submit full applications. The 2026 cycle’s listed dates have passed: the LOI was due May 18, 2026, invited full proposals were due September 8, 2026, and applicants were scheduled to be notified the week of October 26, 2026. The cycle’s project start date is December 1, 2026.
Open Grants
5 open opportunities from National Tuberous Sclerosis Association
American Skin Association Research Grants
National Tuberous Sclerosis Association
Amount
$15,000
Deadline
Rolling / Open
American Skin Association Research Scholar Award
National Tuberous Sclerosis Association
Amount
$60,000
Deadline
Rolling / Open
Autism Science Foundation Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards
National Tuberous Sclerosis Association
Amount
Varies
Deadline
December 1, 2026
Ready to take the next step with National Tuberous Sclerosis Association?
Geographic Focus
Where this funder awards grants
The sources do not state a formal geographic focus for the organization’s grantmaking. In 2025, grant dollars went to recipients in Massachusetts (46%), Texas (16%), Georgia (14%), Illinois (11%), and California (11%); the listed grants also included a recipient in Ohio.
Grant Distribution by State
Share of 2025 grant dollars across all 11 itemized grants.
States
Cities
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.
Grant Insights
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%).
Giving History
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 |
Financial History
Multi-year comparison from IRS filings
| Filing year | Assets | Revenue | Expenses | Grants |
|---|---|---|---|---|
| 2025 | $18,024,174 | $9,807,320 | $9,133,802 | $701,695 (11) |
| 2024 | $17,254,701 | $10,000,895 | $8,660,018 | $594,369 (9) |
| 2023 | $16,085,768 | $10,016,383 | $8,467,648 | $632,808 (13) |
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $18,024,174 | $17,254,701 | $16,085,768 |
| Revenue | $9,807,320 | $10,000,895 | $10,016,383 |
| Expenses | $9,133,802 | $8,660,018 | $8,467,648 |
| Net Investment Income | $23,937 | $52,809 | $36,732 |
Data update history
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
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. Directors listed were Derek Bauer, Julie Blum, Angelique Bordey, Frances Briones, Chip Burkhalter, and Lisa Carlton.
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.
Contact
Mailing address: 8737 Colesville Road 400, Silver Spring, MD 20910
Phone: (301) 562-9890
Website: https://tscalliance.org
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?
National Tuberous Sclerosis Association has no public application process in the sources Grantable reviewed. Check tscalliance.org for current guidelines, or contact the foundation directly before submitting a request.
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 September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Here's the math on researching National Tuberous Sclerosis Association by hand.
Explore Open Grants
Browse active grant opportunities in National Tuberous Sclerosis Association's focus areas in our free grants database
Similar Funders
Funders that support many of the same organizations
Johns Hopkins University
Baltimore, MD
Johns Hopkins University funds education, research, clinical practice, and related programs, with many large awards listed as sub-awards; its 2025 grants had a median of $100,000. Grants went mainly to recipients in California and Maryland, among other states, but no geographic restriction or policy on unsolicited requests is stated.
Assets
$25.3B
Grants
813
Total Given
$594.1M
National Multiple Sclerosis Society
New York, NY
The National Multiple Sclerosis Society funds global research to stop MS, restore lost function, and develop a cure, including research training and shared resources. Its 2025 grants ranged from $6,000 to $1.62 million, with a median of about $156,000. The profile does not state whether it accepts unsolicited requests.
Assets
$189.2M
Grants
92
Total Given
$23.2M
President and Fellows of Harvard College
Cambridge, MA
Harvard’s funding supports education and research, including awards to hospitals, research institutes, and universities, with most reported grant dollars going to Massachusetts. Its 2025 grants ranged from $5,002 to $27.4 million, with a median of $123,018; it also lists smaller opportunities for local artists and performers. The profile does not state whether it accepts unsolicited requests.
Assets
$79.9B
Grants
352
Total Given
$273.3M
Yale University
New Haven, CT
Yale supports education, research, scholarship, preservation, public service, and community organizations, including through sponsored research and fellowships. Its 2025 grants ranged from $3,000 to $14.3 million, with a median of about $136,000; recipients were based mainly in Connecticut, California, Massachusetts, New York, and Pennsylvania. The profile does not state whether Yale accepts unsolicited requests.
Assets
$58.9B
Grants
364
Total Given
$168.2M
American Heart Association Inc
Dallas, TX
The American Heart Association funds basic, clinical, behavioral, translational, population, and other research on cardiovascular, cerebrovascular, and brain health, mainly through research awards to eligible U.S.-based nonprofit institutions. In 2025, grants ranged from $5,000 to $9.9 million, with a median award of $20,000. Applications are submitted through designated programs; the profile does not state whether unsolicited requests are accepted.
Assets
$2.0B
Grants
833
Total Given
$198.2M
The Simons Foundation Inc
New York, NY
The Simons Foundation funds research in mathematics and the basic sciences, as well as autism and other disease research, through grants to research centers, universities, and related organizations. In 2024, grants ranged from $1,480 to $20 million, with a median of $72,000; funding is concentrated in New York, California, and Massachusetts, with awards also made elsewhere in the U.S. and internationally. Whether it accepts unsolicited requests is not stated.
Assets
$4.5B
Grants
1,727
Total Given
$272.0M
The Trustees of Columbia University in the City of New York
New York, NY
Columbia funds research, education and research, and capital projects, primarily through grants to universities and medical and research institutions across the United States, with the largest share going to New York recipients. Its 2025 grants had a median of about $109,000, though awards ranged from $5,350 to $15.1 million. The profile does not state whether it accepts unsolicited requests.
Assets
$26.0B
Grants
417
Total Given
$208.3M
Gates Foundation
Seattle, WA
The Gates Foundation funds work on global health, poverty reduction, gender equality, economic opportunity, and U.S. education, primarily in low-income countries and the United States. Its 2024 grants had a median of $500,000, though amounts varied widely. It generally does not accept unsolicited requests; organizations are usually invited to apply, with occasional published funding opportunities.
Assets
$78.7B
Grants
4,974
Total Given
$6.3B
Annie E Casey Foundation Inc
Baltimore, MD
The Annie E. Casey Foundation funds U.S. nonprofits and other partners working to improve outcomes for children and young people, including family strengthening, child welfare, education, employment, community development and juvenile justice. In 2024, grants ranged from $50 to $1,185,000, with a median of $40,000. Grants are by invitation only; it does not accept unsolicited requests.
Assets
$2.3B
Grants
1,462
Total Given
$93.1M
The Harry and Jeanette Weinberg
Owings Mills, MD
The Harry and Jeanette Weinberg Foundation funds direct services, programs, general operations, and capital projects in housing, health, jobs, education, and aging for low-income and vulnerable people. Its 2024 grants had a median of $50,000; its Small Grants Program offers up to $50,000 over two years, with funding focused on Baltimore, Hawaiʻi, Israel, and Northeastern Pennsylvania. It awards grants by invitation only and does not accept unsolicited requests.
Assets
$1.8B
Grants
872
Total Given
$127.8M
The Keith Campbell Foundation
Bethesda, MD
The Keith Campbell Foundation funds environmental work and more equitable, livable communities, including watershed advocacy, agriculture, drinking water, and water management, with a focus on California and the Chesapeake region and select counties in Maryland and Pennsylvania. Its 2024 grants ranged from $40 to $1.5 million, with a median of $5,000; it accepts unsolicited requests through two grant cycles each year, though prior grantees cannot apply through that process.
Assets
$420.2M
Grants
688
Total Given
$27.9M
Cystic Fibrosis Foundation
Bethesda, MD
The Cystic Fibrosis Foundation funds cystic fibrosis research, drug development, specialized care, and related community and patient-support programs, primarily through opportunities for academic and industry investigators. Its 2024 grants ranged from $2,800 to $12.9 million, with a median grant of about $150,000; the profile does not specify a geographic limit or whether it accepts unsolicited requests.
Assets
$5.0B
Grants
624
Total Given
$189.6M
More Funders in Maryland
National Tuberous Sclerosis Association down — hundreds of funders to go?