Civic Intelligence

Terrys Foundation for Muscular Dystrophy

990 • Fiscal year 2021 • EIN 82-2473513

Aug 01, 2020 to Jul 31, 2021 • Filed on May 25, 2022

Organization ProfileCURERAREDISEASE.ORG
1575 Tremont Street Ste 1107Boston, MA 02120

(607) 215-6401

Siviq Scores

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

Liabilities / Assets

68th percentile

0.21x

Higher debt load relative to assets than 68% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Liabilities / Revenue

56th percentile

0.12x

Higher debt load relative to revenue than 56% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Net Margin

41st percentile

7.9%

Higher net margin than 41% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Top Officer Pay

39th percentile

$0

Higher top officer pay than 39% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2021

Asset Growth

85th percentile

47%

Faster asset growth than 85% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2020 to 2021

Revenue Growth

93rd percentile

174%

Faster revenue growth than 93% of similar nonprofits.

2021 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2020 to 2021

Balance Sheet
Liabilities / Assets68th percentile

Assets

Up

$1,470,434

Up $470,432 (+47%) from 2020

Net Assets

Up

$1,160,354

Up $295,360 (+34%) from 2020

Liabilities

Up

$310,080

Up $175,072 (+130%) from 2020

Revenue And Expenses
Liabilities / Revenue56th percentileNet Margin41st percentile

Revenue

Up

$2,486,822

Up $1,578,634 (+174%) from 2020

Expenses

Up

$2,289,134

Up $1,948,863 (+573%) from 2020

Net Income

Down

$197,688

Down $370,229 (-65%) from 2020

Historical Trend

Balance Sheet Trend

Asset Growth85th 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

2021

Assets$1,470,434
Liabilities$310,080
Net Assets$1,160,354
Open 2021 Filing

Operations Trend

Revenue Growth93rd 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

2021

Revenue$2,486,822
Expenses$2,289,134
Net Income$197,688
Open 2021 Filing
Jump To
Filing Snapshot
Filing Period
Aug 1, 2020 to Jul 31, 2021
Signed
May 25, 2022
Return Version
2020v4.0
Gross Receipts
$2,530,184
Mission and Program Overview

Mission

NONE

Cure rare disease is developing custom therapeutics that are as unique to the individuals they are meant to treat. Our mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. Our customized therapeutics are designed specifically for the men and women who continue to fight for their right to live long, full, healthy lives despite having been diagnosed with a rare genetic disorder for which theyve been told there is no treatment or cure.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$1,000,002$1,145,099▲ $145,097
Savings and Temporary Cash Investments-$228,793-
Prepaid Expenses and Deferred Charges-$95,013-
Land, Buildings, and Equipment, Net-$1,529-
Total Assets$1,000,002$1,470,434▲ $470,432
Liabilities
Accounts Payable and Accrued Expenses$35,258$310,080▲ $274,822
Unsecured Notes Loans Payable$99,750--
Total Liabilities$135,008$310,080▲ $175,072
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$864,994$1,160,354▲ $295,360
Total Net Assets Fund Balance$864,994$1,160,354▲ $295,360
Total Liabilities and Net Assets / Fund Balance$1,000,002$1,470,434▲ $470,432

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$1,529$230$1,759
Compensation and Service Providers
Top Officer Pay39th percentile

Board Members and Trustees

NameTitle
Jennifer HandtBoard Member
Jessica CurranBoard Member
Karen MoralesBoard Member
Keven LinBoard Member
Kwesi AcquayBoard Member
Liz DuffyBoard Member
Mark SmithBoard Member
Melissa Hunter-ensorBoard Member
Renata MaybruckBoard Member
Rose KlassenBoard Member
Sara ColeBoard Member
Stephanie HerzogBoard Member
Richard HorganExecutive Di
Revenue and Support

Revenue Composition

Contributions and Grants
$1,909,649
Program Service Revenue
$0
Investment Income
$4,586
Other Revenue
$572,587
All Other Contributions
$1,909,649
Change in Net Assets
$197,688
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$2,209,497
Total Fundraising Expense$409,175
Salaries, Compensation, and Employee Benefits$74,637
Grants and Similar Amounts Paid$5,000
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Advertising--$359,961$359,961
Other Salaries and Wages$10,335$24,115$34,450$68,900
Fees for Services Other$29,670$23,175$250$53,095
Information Technology-$26,523-$26,523
Fees for Services Accounting-$10,340-$10,340
Office Expenses$5,256$1,943-$7,199
Payroll Taxes$860$2,009$2,868$5,737
Grants to Domestic Orgs$5,000--$5,000
Conferences and Meetings-$4,150-$4,150
Insurance-$3,141-$3,141
Travel$1,220$134$1,000$2,354
Interest-$1,934-$1,934
Other Expenses$1,727,863$1,012$4,107$1,012
Depreciation Depletion-$230-$230
Total Functional Expenses$1,780,204$99,755$409,175$2,289,134
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$596,939
Fundraising Direct Expenses$43,362
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Golf Tournament$334,285$334,285$19,546$314,739
Gala$179,561$179,561$15,924$163,637
Total Events$596,939$596,939$43,362$553,577
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
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
No
Other officer compensation reviewed
No
Conflict-of-interest policy
No
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Page 6, Part VI, Line 11B

“Form 990 is distributed via email to all members of the governing body prior to filing.”

Form 990, Page 6, Part VI, Line 19

“The organization makes its financial statements and other organizing documents available upon request.”

Filing and Contact Details

Filer

Filer Name
Cure Rare Disease Inc
EIN
82-2473513
Phone
6072156401
Address
1575 TREMONT STREET STE 1107, BOSTON, MA 02120

Signing Officer

Name
Richard Horgan
Title
Executive Director
Phone
6072156401
Signed
2022-05-25
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Richard Horgan
Formed
2018
Legal Domicile
Ma
Voting Board Members
13
Independent Board Members
13
Employees
5
Volunteers
6

Preparer

Firm
Wilson Lewis
Address
6650 SUGARLOAF PKWY STE 900, DULUTH, GA 30097
Preparer
Vivian Dempsey
Phone
7704761004
Supplemental Narrative

Additional Explanations

FORM 990 - ORGANIZATION'S MISSION

“Cure rare disease is developing custom therapeutics that are as unique to the individuals they are meant to treat. Our mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. Our customized therapeutics are designed specifically for the men and women who continue to fight for their right to live long, full, healthy lives despite having been diagnosed with a rare genetic disorder for which theyve been told there is no treatment or cure.”

Form 990, Part XI, Line 9

“Prior period adjustment -18,079”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/PrincipalOfficerNm0RICHARD HORGAN
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IRS990ScheduleD/OtherLandBuildingsGrp/DepreciationAmt0230
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0CURE RARE DISEASE IS DEVELOPING CUSTOM THERAPEUTICS THAT ARE AS UNIQUE TO THE INDIVIDUALS THEY ARE MEANT TO TREAT. OUR MISSION IS TO OFFER EFFECTIVE, LIFE-SAVING TREATMENTS DEVELOPED THROUGH COLLABORATIONS WITH WORLD-RENOWNED RESEARCHERS AND CLINICIANS, AND IN PARTNERSHIP WITH OUR GENEROUS DONORS. OUR CUSTOMIZED THERAPEUTICS ARE DESIGNED SPECIFICALLY FOR THE MEN AND WOMEN WHO CONTINUE TO FIGHT FOR THEIR RIGHT TO LIVE LONG, FULL, HEALTHY LIVES DESPITE HAVING BEEN DIAGNOSED WITH A RARE GENETIC DISORDER FOR WHICH THEYVE BEEN TOLD THERE IS NO TREATMENT OR CURE.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1FORM 990 IS DISTRIBUTED VIA EMAIL TO ALL MEMBERS OF THE GOVERNING BODY PRIOR TO FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2THE ORGANIZATION MAKES ITS FINANCIAL STATEMENTS AND OTHER ORGANIZING DOCUMENTS AVAILABLE UPON REQUEST.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3PRIOR PERIOD ADJUSTMENT -18,079
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990 - ORGANIZATION'S MISSION
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PAGE 6, PART VI, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PAGE 6, PART VI, LINE 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PART XI, LINE 9
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IRS990/UponRequestInd0X
IRS990/USAddress/AddressLine1Txt01575 TREMONT STREET 1107
IRS990/USAddress/CityNm0BOSTON
IRS990/USAddress/StateAbbreviationCd0MA
IRS990/USAddress/ZIPCd002120
IRS990/VotingMembersGoverningBodyCnt013
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IRS990/WebsiteAddressTxt0CURERAREDISEASE.ORG
IRS990/WhistleblowerPolicyInd0false
ReturnHeader/BuildTS02022-09-23 18:48:47Z
ReturnHeader/BusinessOfficerGrp/DiscussWithPaidPreparerInd0true
ReturnHeader/BusinessOfficerGrp/PersonNm0RICHARD HORGAN
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0EXECUTIVE DIRECTOR
ReturnHeader/BusinessOfficerGrp/PhoneNum06072156401
ReturnHeader/BusinessOfficerGrp/SignatureDt02022-05-25
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0CURE RARE DISEASE INC
ReturnHeader/Filer/BusinessNameControlTxt0CURE

Document Assets

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Filings

Displayed year

2021 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,470,434
Liabilities
$310,080
Net assets
$1,160,354
Revenue
$2,486,822
Expenses
$2,289,134
Net income
$197,688
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