Civic Intelligence

Terrys Foundation for Muscular Dystrophy

990 • Fiscal year 2024 • EIN 82-2473513

Aug 01, 2023 to Jul 31, 2024 • Filed on Jun 04, 2025

Organization ProfileCURERAREDISEASE.ORG
4 Research DrWoodbridge, CT 06525

(607) 215-6401

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

76th percentile

0.42x

Higher debt load relative to assets than 76% of similar nonprofits.

2024 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

77th percentile

0.57x

Higher debt load relative to revenue than 77% of similar nonprofits.

2024 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2024

Net Margin

91st percentile

55%

Higher net margin than 91% of similar nonprofits.

2024 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

67th percentile

$174,441

Higher top officer pay than 67% of similar nonprofits.

Top officer pay equals 3.9% of source-year revenue.

2024 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2024

Asset Growth

95th percentile

82%

Faster asset growth than 95% of similar nonprofits.

2024 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

90th percentile

93%

Faster revenue growth than 90% of similar nonprofits.

2024 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets76th percentile

Assets

Up

$5,973,877

Up $2,696,310 (+82%) from 2023

Net Assets

Up

$3,455,972

Up $2,434,211 (+238%) from 2023

Liabilities

Up

$2,517,905

Up $262,099 (+12%) from 2023

Revenue And Expenses
Liabilities / Revenue77th percentileNet Margin91st percentile

Revenue

Up

$4,438,510

Up $2,137,566 (+93%) from 2023

Expenses

Up

$2,003,149

Up $45,479 (+2.3%) from 2023

Net Income

Up

$2,435,361

Up $2,092,087 (+609%) from 2023

Historical Trend

Balance Sheet Trend

Asset Growth95th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$6.0M$4.0M$2.0M$0Assets 2018: $16,349Liabilities 2018: $0Net Assets 2018: $16,3492018Assets 2019: $300,026Liabilities 2019: $2,949Net Assets 2019: $297,0772019Assets 2020: $1,000,002Liabilities 2020: $135,008Net Assets 2020: $864,9942020Assets 2021: $1,470,434Liabilities 2021: $310,080Net Assets 2021: $1,160,3542021Assets 2022: $839,519Liabilities 2022: $213,008Net Assets 2022: $626,5112022Assets 2023: $3,277,567Liabilities 2023: $2,255,806Net Assets 2023: $1,021,7612023Assets 2024: $5,973,877Liabilities 2024: $2,517,905Net Assets 2024: $3,455,9722024

Highlighted filing

2024

Assets$5,973,877
Liabilities$2,517,905
Net Assets$3,455,972
Open 2024 Filing

Operations Trend

Revenue Growth90th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$6.0M$4.0M$2.0M$0-$2.0MRevenue 2018: $68,710Expenses 2018: $52,361Net Income 2018: $16,3492018Revenue 2019: $347,928Expenses 2019: $67,200Net Income 2019: $280,7282019Revenue 2020: $908,188Expenses 2020: $340,271Net Income 2020: $567,9172020Revenue 2021: $2,486,822Expenses 2021: $2,289,134Net Income 2021: $197,6882021Revenue 2022: $2,797,783Expenses 2022: $3,210,905Net Income 2022: -$413,1222022Revenue 2023: $2,300,944Expenses 2023: $1,957,670Net Income 2023: $343,2742023Revenue 2024: $4,438,510Expenses 2024: $2,003,149Net Income 2024: $2,435,3612024

Highlighted filing

2024

Revenue$4,438,510
Expenses$2,003,149
Net Income$2,435,361
Open 2024 Filing
Jump To
Filing Snapshot
Filing Period
Aug 1, 2023 to Jul 31, 2024
Signed
Jun 4, 2025
Return Version
2023v6.0
Gross Receipts
$5,194,860
Mission and Program Overview

Mission

NONE

Our mission is to enable and finance the development of life-saving genetic medicines for ultra-rare patient populations previously deemed too rare to treat. To realize this, our unique ecosystems facilitates collaboration between world-renowned researchers and clinicians, policy experts and our generous donors. Together, we are fundamentally changing the ultra-rare disease experience and burden for millions ofpeople around the world with our discoveries and methods - while bringing hope to patients waiting for a cure.

Balance Sheet Detail
LineBeginningEndChange
Assets
Land, Buildings, and Equipment, Net$2,111,098$2,078,032▼ $33,066
Savings and Temporary Cash Investments$350,573$1,412,422▲ $1,061,849
Pledges and Grants Receivable-$345,468-
Loans From Officers Directors$350,000$338,887▼ $11,113
Cash and Non-Interest-Bearing Accounts$42,786$140,463▲ $97,677
Prepaid Expenses and Deferred Charges$38,812$101,310▲ $62,498
Investments in Publicly Traded Securities$314,779$89,536▼ $225,243
Accounts Receivable$58,102$5,250▼ $52,852
Intangible Assets$5,443$5,217▼ $226
Other Notes and Loans Receivable, Net-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Inventories for Sale or Use-$0-
Total Assets$3,277,567$5,973,877▲ $2,696,310
Other Assets Total$355,974$1,796,179▲ $1,440,205
Liabilities
Mortgage Notes Payable Secured by Investment Property$1,476,508$1,443,824▼ $32,684
Deferred Revenue$88,801$391,123▲ $302,322
Accounts Payable and Accrued Expenses$322,460$269,189▼ $53,271
Unsecured Notes Loans Payable-$46,025-
Other Liabilities$18,037$28,857▲ $10,820
Total Liabilities$2,255,806$2,517,905▲ $262,099
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$965,954$3,122,498▲ $2,156,544
Net Assets With Donor Restrictions$55,807$333,474▲ $277,667
Total Net Assets Fund Balance$1,021,761$3,455,972▲ $2,434,211
Total Liabilities and Net Assets / Fund Balance$3,277,567$5,973,877▲ $2,696,310

Asset Categories

AssetBook ValueDepreciationBasis
Buildings$1,442,812$74,572$1,517,384
Land$541,270-$541,270
Other Land Buildings$77,583$17,417$95,000
Equipment$16,367$1,384$17,751
Other Assets Org$3,124--
Compensation and Service Providers
Top Officer Pay67th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Richard HorganFounder & CEOFT$164,275$10,166$174,441

Board Members and Trustees

NameTitle
Alexandra UrmanMember
Brent WarnerMember
Cody TranbargerMember
Greg KlassenMember
Jeremy SternbergMember
Jessica CurranMember
Klaus VeitingerMember
Kwesi AcquayMember
Mark SmithMember
Mike WilliamsMember
Stephanie HerzogMember
Revenue and Support

Revenue Composition

Contributions and Grants
$4,397,214
Program Service Revenue
$0
Investment Income
$47,166
Other Revenue
$-5,870
All Other Contributions
$2,184,446
Change in Net Assets
$2,435,361

Audited Revenue Reconciliation

Revenue per Audited Statements
$4,438,510
Revenue Not Reported on Form 990
$678,440
Total Revenue per Audited Statements
$5,116,950
Total Revenue per Form 990
$4,438,510
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,643,597
Salaries, Compensation, and Employee Benefits$357,052
Total Fundraising Expense$106,382
Grants and Similar Amounts Paid$2,500
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Occupancy$224,987$24,999-$249,986
Current Officers, Directors, Trustees, and Key Employees$205,246$11,362$19,449$236,057
Advertising$101,355$658$5,840$107,853
Other Salaries and Wages$73,064$4,045$6,923$84,032
Interest$69,804$7,756-$77,560
Fees for Services Legal$49,439$2,894-$52,333
Fees for Services Accounting$2,267$41,590-$43,857
Other Expenses$416$3,732$27,414$31,562
Payroll Taxes$22,767$1,787$2,127$26,681
Travel$19,895$1,758$5,026$26,679
Office Expenses$5,913$7,030$12,300$25,243
Fees for Services Other$6,040$13,300$105$19,445
Insurance$6,246$7,666-$13,912
Other Employee Benefits$7,731$2,551-$10,282
Grants to Domestic Orgs$2,500--$2,500
Depreciation Depletion-$651-$651
All Other Expenses$-455,848$-12,288-$-468,136
Total Functional Expenses$1,754,491$142,276$106,382$2,003,149

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,682,739
Expenses per Audited Statements$2,003,149
Total Expenses per Form 990$2,003,149
Expenses Not Reported on Form 990$679,590
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$228,570
Fundraising Direct Expenses$212,165
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
September Under the Stars$648,368$209,660$123,617$86,043
Waves of Hope$140,968$18,910$507$18,403
Total Events$789,336$228,570$212,165$16,405
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Loans from Officers, Directors, Trustees, and Key Employees$350,000$338,887▼ $11,113
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Security Deposits$22,577
Interest Payable$6,280
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“Form 990 is distributed via email to the audit committee who reviews and questions as necessary.”

Form 990, Part VI, Section B, Line 12C

“When a volunteer or board member begins engaging with cure rare disease, they must sign the conflict of interest policy and complete a questionnaire.”

Form 990, Part VI, Section B, Line 15A

“The board meets independent of the President and discusses compensation based on organization's budget and market comparison.”

Form 990, Part VI, Section C, Line 19

“No documents available to the public.”

Filing and Contact Details

Filer

Filer Name
Cure Rare Disease Inc
EIN
82-2473513
Phone
6072156401
Address
4 RESEARCH DR, WOODBRIDGE, CT 06525

Signing Officer

Name
Richard Horgan
Title
Founder & CEO
Signed
2025-06-04
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Richard Horgan
Formed
2018
Legal Domicile
Ma
Voting Board Members
11
Independent Board Members
10
Employees
5
Volunteers
12

Preparer

Firm
Leaf & Cole LLP
Address
2810 Camino Del Rio South Suite 200, San Diego, CA 92108
Preparer
Jenny Kikuno
Phone
6192947200
Supplemental Narrative

Financial Statement Notes

Part X : FIN48 Footnote

“THE ORGANIZATION IS EXEMPT FROM INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND SECTION 23701(D)OF THE CALIFORNIA REVENUE AND TAXATION CODE. THE ORGANIZATION BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN, AND AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE ORGANIZATION IS NOT A PRIVATE FOUNDATION.The Organizations Return of Organization Exempt from Income Tax for the years ended JULY 31, 2024, 2023, 2022, AND 2021 are subject to examination by the Internal Revenue Service and State taxing authorities, generally three to four years after the returns were filed.”

Part XI, Line 2D: Other revenue amounts included in F/S but not included on form 990

“Rental expenses $544185 special event expenses $135405”

Part XII, Line 2D: Other expenses and losses per audited F/S

“Rental expenses $544185 special event expenses $135405”

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Document Assets

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Filings

Displayed year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$5,973,877
Liabilities
$2,517,905
Net assets
$3,455,972
Revenue
$4,438,510
Expenses
$2,003,149
Net income
$2,435,361
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$5.97$2.52$3.46$4.44$2.00$2.44
2023Detailed filing. Detailed filing data is available for this year.$3.28$2.26$1.02$2.30$1.96$0.34
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.84$0.21$0.63$2.80$3.21$0.41
2021Detailed filing. Detailed filing data is available for this year.$1.47$0.31$1.16$2.49$2.29$0.20
2020Detailed filing. Detailed filing data is available for this year.$1.00$0.14$0.86$0.91$0.34$0.57
2019Summary only. Only limited summary data is available for this year.$0.30$0.00$0.30$0.35$0.07$0.28
2018Detailed filing. Detailed filing data is available for this year.$0.02$0.00$0.02$0.07$0.05$0.02
Peer Organizations

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