Cure Cdkl5 Epilepsy Foundation
Nonprofit profile at a glance
- EIN
- 991303165
- IRS 990-EZ coverage
- 2023–2024
- Forms available
- Form 990-EZ 2024
- Location
- New York, NY, USA
- Phone
- 9147158912
- Rating
- 71
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Health
Reported finances
- Revenue
- $192,305
- Expenses
- $14,000
- Assets
- $178,305
- Liabilities
- $0
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
3 people listed
Executive titles in this filing
- Andreas Borg (President)
People named in this filing
- Aurelie Hasse (Treasurer)
- Andreas Borg (President)
- Camille Ranadive (Secretary)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Cure CDKL5 Epilepsy Foundation's mission is to find a cure for children suffering from CDKL5 Deficiency Disorder and improve the qualtiy of life for them and their families. We will provide financial grants and payments to advance science and research to the academic, biopharma, scientific and medical community to pursue our mission. CDKL5 is a rare developmental epileptic encephalophathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity.
What it reported doing in 2024
In 2024, CURE5 raised $192k to advance research and therapeutic development for CDKL5 Deficiency Disorder. The Foundation paid $14k to Unravel Biosciences which provided specialized scientific services supporting preclinical research. Specifically, Unravel Biosciences leveraged its AI-driven RNA analysis for a rapid drug repurposing screen. The data collected will be used in partnership with other CURE5 grantees. In addition, the Foundation designed and launched its grantmaking framework, identified research collaborators, and initiated planning for larger research grants to be awarded in 2025. These activities represent the Foundation's first year of programmatic operations in pursuit of its exempt purpose of supporting scientific discovery and treatments for CDKL5 Deficiency Disorder. The principal project funded in 2025 will be an iPSC portfolio with Boston Children's and building on our repurposing work with several other partners.
Operating model
- Revenue model
- Donor-supported. 100% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
SUPPORTED - The filed numbers largely add up and program spending has grown recently. A relatively small share of available resources goes toward mission work.
Rating breakdown
- Financial Efficiency: 42
- Transparency & Controls: 100
- Sustainability: 92
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 7.3%; rating input score 7
- Program expense ratio: 100%; rating input score 100
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
Sustainability
- Operating margin: 92.7%; rating input score 99; 99th percentile among comparable filings
- Total-asset coverage ratio: 12.74; rating input score 99; 99th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 76; 76th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 63; 63rd percentile among comparable filings
Growth
- Program expense growth: 200% per year; rating input score 100; 100th percentile among comparable filings
- Revenue growth: 200% per year; rating input score 100; 100th percentile among comparable filings
- Asset growth: 200% per year; rating input score 100; 100th percentile among comparable filings
Details
- Where the money goes: 7.3% of revenue deployed · 100% of spending went to programs
- Governance: Filed governance answers
- Accomplishments: 1 filed program accomplishment · $14K in reported program spending
- Leadership: top reported pay $0 · 3 people listed
- Consistency: 9 of 9 current checks pass
- Schedules: 3 filed schedules
- Filing history: 2 filing years from 2023 to 2024
- Contacts: How to reach this organization
- Money network: Resolved incoming and outgoing counterparties from filed money flows.
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Financial Efficiency: Mission deployment rate scored 7/100.