International Rett Syndrome Foundation

EIN: 311682518 501(c)(3) Medical Research

Cincinnati, OH

Total Revenue
$4,813,748
Total Expenses
$5,531,022
Total Assets
$5,325,567
Net Assets
$4,987,425
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Financial Trends

Organization Details

Formation Year
1999
Legal Domicile
OH
Principal Officer
Melissa Kennedy
Phone
5138743020
Tax Period
2024-01-01 to 2024-12-31

International Rett Syndrome Foundation, founded in 1999, is a community nonprofit in the Medical Research sector that reported $4.8M in total revenue in fiscal year 2024. Expenses of $5.5M exceeded revenue, resulting in a 15% operating deficit.

Mission

To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.

Program Service Accomplishments

Program 1
Expenses: $3,676,545 Revenue: $200,291

Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational grants throughout the world...

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Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational grants throughout the world. We fund post-doctoral researchers, host science symposia to allow for discussions and networking of the world's Rett experts. We fund compound development directly through financial support of high throughput screening systems as well as financially supporting clinical trials. We actively support a clinical research network that develops care guidelines and contributes to a data registry that builds upon the NHS funded Natural History Study, and aims to continue to deepen our understanding of Rett syndrome and support drug development.

Program 2
Expenses: $1,084,461 Revenue: $133,724

We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education...

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We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education days. We provide 24/7/365 access to 2 staff members who are devoted to family engagement. We provide educational materials for families, caregivers, schools and therapists. We advocate to federal officials, keeping Rett syndrome on the list of funding priorities. We work with industry in the design of clinical trials, ensuring the clinical trial environment is family centered. We support a network of clinics in North America that is building guidelines for clinical care, making those guidelines available to families as they work with their child's care team, ensuring they are receiving appropriate care.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $3,808,219
Program Service Revenue $334,015
Investment Income $261,285
Other Revenue $410,229
TOTAL REVENUE $4,813,748

Expense Breakdown

Grants Paid $1,856,999
Salaries & Benefits $1,288,538
Fundraising Expenses $428,352
Program Expenses $4,761,006
Other Expenses $2,385,485
TOTAL EXPENSES $5,531,022

Year-over-Year Comparison

2024 2023 Change
Revenue $4,813,748 $4,855,820 0.0%
Expenses $5,531,022 $3,723,772 +0.5%
Net Income $-717,274 $1,132,048 -1.6%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
11
Independent Members
11
Employees
16
Volunteers
200

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
6
$194,427
Total Directors
12
$5,208
Key Employees
0
$0
Highest Compensated
4
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Jospeh Horrigan MD Trustee 0.50
Director
$0 $0 $0
Lisa Monteggia PhD Trustee 0.50
Director
$0 $0 $0
David Pass PharmD Chairman 1.00
Officer Director
$0 $0 $0
Mitch Bleske Treasurer 1.00
Officer Director
$0 $0 $0
Gordon Rich Founding Seat - Non Voting 0.50
Officer Director
$0 $0 $0
Alan Shukovsky Trustee 0.50
Director
$0 $0 $0
Leslie Mehta Esq Interim Chief Executive Officer 0.50
Officer Director
$5,208 $0 $5,208
Mary Forrest Engel Trustee 0.50
Director
$0 $0 $0
Steve Wood Vice Chairman 0.50
Officer Director
$0 $0 $0
Laura Stoppel PhD Trustee 0.50
Director
$0 $0 $0
Parthy Evans Trustee - Start 07/24 0.50
Director
$0 $0 $0
Steve Marconi CPA Trustee - Start 07/24 0.50
Director
$0 $0 $0
Melissa Kennedy - Exit 1224 Chief Executive Officer 40.00
Officer
$186,940 $2,279 $189,219
Nupur Garg VP of Research 40.00
Highest
$187,300 $7,384 $194,684
Timothy Frank Development Director 40.00
Highest
$116,466 $2,264 $118,730
Meghan Cordeiro Marketing & Communication Director 40.00
Highest
$113,308 $6,234 $119,542
Drew Jones VP of Clinical Development 40.00
Highest
$108,976 $839 $109,815
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 $4,813,748 $5,531,022 $5,325,567 $-717,274
2023 $4,855,820 $3,723,772 $6,263,405 $1,132,048
2022 $3,669,308 $5,494,227 $6,438,774 $-1,824,919
2021 $4,132,287 $4,097,063 $7,416,506 $35,224
2020 $3,850,950 $2,465,808 $6,281,992 $1,385,142
2019 $4,782,320 $2,898,109 $6,238,495 $1,884,211
2018 $3,648,554 $3,606,274 $5,507,933 $42,280
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