Cure LBSL
Cure LBSL is a public charity based in Arlington, Virginia, that raises awareness of LBSL, funds research, and supports affected individuals and families around the world. Its website describes LBSL as a rare genetic disorder affecting the brain and spinal cord.
Cure LBSL at a glance
In short: Cure LBSL reported $636K in grants paid in 2024 (a total; its filing lists no individual grants). Source: 2024 IRS Form 990.
- Grants paid (2024)
- $636,000 — reported as a total on the IRS filing, without an itemized list
- -57.7% vs 2023
- Total assets
- $955,625
- +29.2% vs 2023
- Revenue (2024)
- $1,052,682
- -43.2% vs 2023
- Net investment income (2024)
- $9
- -99.5% vs 2023
- Expenses (2024)
- $845,152
- -49.1% vs 2023
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to Cure LBSL
- Contact
Mailing address: 3520 S Wakefield St, Arlington, VA 22206
Phone: (202) 487-4235
Website: https://curelbsl.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who Cure LBSL funds
How this funder distributes its grants
Grant Size Distribution
6 grants across all recorded years
The most common grant size was in the $250–500K range: 2 grants of 6 (33%).
Geographic Focus
Where this funder awards grants
Cure LBSL describes its patient and family support as global. Its website identifies natural history study sites in the United States, Finland, and the Netherlands, and identifies Kennedy Krieger Institute in Baltimore as a research partner. The available information does not state a geographic limit for grantmaking.
Grant Distribution by State
States
Cities
How Cure LBSL gives
- Giving grew 234% from 2020 to 2023. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2024, annual grant giving ranged from $255K (2019) to $1.5M (2023). In 2024 it reported $636K in grants paid, as a total without an itemized list.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Kennedy Krieger Institute Baltimore, MD | Research | $1,502,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $955,625 | $1,052,682 | $845,152 | $636,000 | Total only | $9 |
| 2023 | $739,400 | $1,852,552 | $1,661,665 | $1,502,000 | 1 | $1,765 |
| 2022 | $535,129 | $1,410,138 | $1,319,933 | $1,144,010 | 3 | $1 |
| 2021 | $444,924 | $599,293 | $414,562 | $400,000 | 1 | — |
| 2020 | $260,193 | $659,411 | $470,491 | $450,000 | 1 | — |
| 2019 | $71,272 | $308,282 | $279,767 | $255,000 | 1 | — |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
Cure LBSL states its mission is to accelerate research and the development of effective treatments and a cure for LBSL, while supporting patients and families through education, advocacy, and community. Its 2024 filing describes its mission as providing funding to rare-disease research and supporting affected families.
The organization’s website reports that it supports research around the world and helped launch natural history studies in the United States, Finland, and the Netherlands. It also offers travel grants to a limited number of domestic and international patients and caregivers participating in a natural history study; these are participant supports, not grants for outside applicants.
Grantmaking
IRS filing data reports one grant totaling $1,502,000 in 2023 and three grants totaling $1,144,010 in 2022. The corresponding average grant amounts were $1,502,000 and about $381,337. No grants were reported for 2024. The available information does not identify the recipients of those grants.
Separately, the organization stated in its 2024 filing that it provided $636,000 to a research program at Kennedy Krieger Institute. It described the work as developing cells with disease attributes and animal models, testing therapeutics, and expanding a natural history study with known patients. This reported program funding is distinct from the grant totals in the IRS filing data.
No application process, materials, restrictions, or deadline are stated in the available information.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2024 filing lists Elizabeth Gulugian as board chair. Directors listed are Morgan Stern, Lance Stern, Megan Mitchell, Chris Gulugian, Edward Blakey, Michael McGinn (listed as “until 724”), and Elizabeth A. McGinn.
Cure LBSL is led by Elizabeth Gulugian, Board Chair since 2021 (on filings since 2019); none of the 7 officers listed in 2024 report compensation.
Officers on the 2024 filing
Elizabeth Gulugian
Board Chair
Director → Board Chair, 2021
On filings since 2019
5 hrs/week
No compensation reported
Chris Gulugian
Director
On filings since 2019
1 hr/week
No compensation reported
Elizabeth A. McGinn
Director
On filings since 2019
15 hrs/week
No compensation reported
Lance Stern
Director
On filings since 2019
1 hr/week
No compensation reported
Megan Mitchell
Director
On filings since 2019
1 hr/week
No compensation reported
Morgan Stern
Director
On filings since 2019
1 hr/week
No compensation reported
Edward Blakey
Director
On filings since 2021
1 hr/week
No compensation reported
Former officers (1)
- Former: Michael McGinn (2019–2024) — Director · Filing note: Until 724
Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Cure LBSL
How much does Cure LBSL give each year?
Cure LBSL reported $636K in grants paid in 2024 on its 2024 IRS Form 990, as a total without an itemized list of grants. In 2023 it gave $1.5M across 1 grant.
How large is Cure LBSL?
Cure LBSL reported $956K in total assets on its 2024 IRS Form 990. Its revenue that year was $1.1M.
What does Cure LBSL fund?
Cure LBSL states its mission is to accelerate research and the development of effective treatments and a cure for LBSL, while supporting patients and families through education, advocacy, and community. See mission & focus areas ↑
How do I apply for a grant from Cure LBSL?
Cure LBSL has no public application process in the sources Grantable reviewed. Check curelbsl.org for current guidelines, or contact the foundation directly before submitting a request.
Where does Cure LBSL make grants?
Cure LBSL describes its patient and family support as global. Its website identifies natural history study sites in the United States, Finland, and the Netherlands, and identifies Kennedy Krieger Institute in Baltimore as a research partner. The available information does not state a geographic limit for grantmaking.
What is Cure LBSL's EIN?
Cure LBSL's EIN (Employer Identification Number) is 46-2829156. IRS Form 990 filing data is available on this page for 2019–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2019 (received by the IRS July 15, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS October 14, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS July 22, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS October 18, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS July 9, 2026)
Live grants for the work Cure LBSL funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Cure LBSL's focus areas in our free grants database
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Figures come from Cure LBSL'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.
Cure LBSL down — hundreds of funders to go?