Civic Intelligence

Hypertrophic Cardiomyopathy Association

EIN 41-1855605 • 501(c)3 • Denville, NJ

Profile

To provide support, advocacy and education to patients, families, the medical community and the public about hypertrophic cardiomyopathy, while supporting research and fostering the development of treatments.

66 Ford Road Suite 213BDenville, NJ 07834

www.4hcm.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

65th percentile

0.18x

Higher debt load relative to assets than 65% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

65th percentile

0.19x

Higher debt load relative to revenue than 65% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

78th percentile

26%

Higher net margin than 78% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

89th percentile

46%

Faster asset growth than 89% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

84th percentile

48%

Faster revenue growth than 84% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets65th percentile

Assets

Up

$2,036,007

Up $637,155 (+46%) from 2023

Liabilities

Up

$371,272

Up $124,380 (+50%) from 2023

Net Assets

Up

$1,664,735

Up $512,775 (+45%) from 2023

Operations
Liabilities / Revenue65th percentileNet Margin78th percentile

Revenue

Up

$1,958,440

Up $632,178 (+48%) from 2023

Expenses

Up

$1,445,665

Up $365,189 (+34%) from 2023

Net Income

Up

$512,775

Up $266,989 (+109%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth89th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$3.0M$2.0M$1.0M$0Assets 2010: $37,024Liabilities 2010: $0Net Assets 2010: $37,0242010Assets 2011: $45,353Liabilities 2011: $5,149Net Assets 2011: $40,2042011Assets 2012: $31,013Liabilities 2012: $4,061Net Assets 2012: $26,9522012Assets 2013: $62,473Liabilities 2013: $5,306Net Assets 2013: $57,1672013Assets 2014: $44,700Liabilities 2014: $652Net Assets 2014: $44,0482014Assets 2015: $64,240Liabilities 2015: $3,761Net Assets 2015: $60,4792015Assets 2016: $52,990Liabilities 2016: $0Net Assets 2016: $52,9902016Assets 2017: $5,546Liabilities 2017: $1,458Net Assets 2017: $4,0882017Assets 2018: $167,668Liabilities 2018: $0Net Assets 2018: $167,6682018Assets 2019: $296,471Liabilities 2019: $0Net Assets 2019: $296,4712019Assets 2020: $313,163Liabilities 2020: $0Net Assets 2020: $313,1632020Assets 2021: $577,031Liabilities 2021: $6,378Net Assets 2021: $570,6532021Assets 2022: $1,085,584Liabilities 2022: $173,124Net Assets 2022: $912,4602022Assets 2023: $1,398,852Liabilities 2023: $246,892Net Assets 2023: $1,151,9602023Assets 2024: $2,036,007Liabilities 2024: $371,272Net Assets 2024: $1,664,7352024

Highlighted filing

2024

Assets$2,036,007
Liabilities$371,272
Net Assets$1,664,735
Open 2024 Filing

Operations Trend

Revenue Growth84th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$2.0M$1.0M$0-$1.0MRevenue 2010: $219,459Expenses 2010: $265,958Net Income 2010: -$46,4992010Revenue 2011: $242,741Expenses 2011: $239,561Net Income 2011: $3,1802011Revenue 2012: $243,145Expenses 2012: $256,397Net Income 2012: -$13,2522012Revenue 2013: $185,681Expenses 2013: $155,466Net Income 2013: $30,2152013Revenue 2014: $208,597Expenses 2014: $221,716Net Income 2014: -$13,1192014Revenue 2015: $186,702Expenses 2015: $170,271Net Income 2015: $16,4312015Revenue 2016: $184,771Expenses 2016: $192,260Net Income 2016: -$7,4892016Revenue 2017: $129,019Expenses 2017: $177,921Net Income 2017: -$48,9022017Revenue 2018: $355,678Expenses 2018: $192,098Net Income 2018: $163,5802018Revenue 2019: $320,578Expenses 2019: $191,775Net Income 2019: $128,8032019Revenue 2020: $390,972Expenses 2020: $374,280Net Income 2020: $16,6922020Revenue 2021: $804,960Expenses 2021: $531,813Net Income 2021: $273,1472021Revenue 2022: $1,106,885Expenses 2022: $796,317Net Income 2022: $310,5682022Revenue 2023: $1,326,262Expenses 2023: $1,080,476Net Income 2023: $245,7862023Revenue 2024: $1,958,440Expenses 2024: $1,445,665Net Income 2024: $512,7752024

Highlighted filing

2024

Revenue$1,958,440
Expenses$1,445,665
Net Income$512,775
Open 2024 Filing

Filings

Most recent year

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

Open filing
Assets
$2,036,007
Liabilities
$371,272
Net assets
$1,664,735
Revenue
$1,958,440
Expenses
$1,445,665
Net income
$512,775
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$2.04$0.37$1.66$1.96$1.45$0.51
2023Summary only. Only limited summary data is available for this year.$1.40$0.25$1.15$1.33$1.08$0.25
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.09$0.17$0.91$1.11$0.80$0.31
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.58$0.01$0.57$0.80$0.53$0.27
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.31$0.00$0.31$0.39$0.37$0.02
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.30$0.00$0.30$0.32$0.19$0.13
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.17$0.00$0.17$0.36$0.19$0.16
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.01$0.00$0.00$0.13$0.18$0.05
2016XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.05$0.00$0.05$0.18$0.19$0.01
2015Summary only. Only limited summary data is available for this year.$0.06$0.00$0.06$0.19$0.17$0.02
2014Summary only. Only limited summary data is available for this year.$0.04$0.00$0.04$0.21$0.22$0.01
2013Summary only. Only limited summary data is available for this year.$0.06$0.01$0.06$0.19$0.16$0.03
2012Summary only. Only limited summary data is available for this year.$0.03$0.00$0.03$0.24$0.26$0.01
2011Summary only. Only limited summary data is available for this year.$0.05$0.01$0.04$0.24$0.24$0.00
2010Summary only. Only limited summary data is available for this year.$0.04$0.00$0.04$0.22$0.27$0.05
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 10, 2025
Return Version
2024v5.2
Gross Receipts
$1,968,876
Mission and Program Overview

Mission

To provide education, information, support and advocacy to patients, their families and the medical community with regard to hypertrophic cardiomyopathy and raise public awareness of hcm.

To provide support, advocacy and education to patients, families, the medical community and the public about hypertrophic cardiomyopathy, while supporting research and fostering the development of treatments.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$1,012,481$1,387,229▲ $374,748
Accounts Receivable$171,546$268,296▲ $96,750
Investments in Publicly Traded Securities$121,605$127,942▲ $6,337
Prepaid Expenses and Deferred Charges$4,564$36,885▲ $32,321
Total Assets$1,398,852$2,036,007▲ $637,155
Other Assets Total$88,656$215,655▲ $126,999
Liabilities
Other Liabilities$83,020$212,542▲ $129,522
Deferred Revenue$111,333$92,139▼ $19,194
Accounts Payable and Accrued Expenses$52,539$66,591▲ $14,052
Total Liabilities$246,892$371,272▲ $124,380
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,071,188$1,175,483▲ $104,295
Net Assets With Donor Restrictions$80,772$489,252▲ $408,480
Total Net Assets Fund Balance$1,151,960$1,664,735▲ $512,775
Total Liabilities and Net Assets / Fund Balance$1,398,852$2,036,007▲ $637,155

Asset Categories

AssetBook ValueDepreciationBasis
Other Assets Org$210,019--
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseOtherTotal
Lisa SalbergCEO/vice ChairFT$131,703$5,480$137,183

Board Members and Trustees

NameTitle
Gordon Fox PhdChair
Amit Kalia PhdDirector
Bill RossiDirector
Billur DowseDirector
Isaac Rodriguez-chavez Phd MhDirector
KEVIN O'CONNOR MDDirector
Martin Maron MdDirector
Mike Lynch MdDirector
Rosemary ConlonDirector
Adam SalbergSecretary
Rob LorfinkTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,797,244
Program Service Revenue
$91,365
Investment Income
$66,179
Other Revenue
$3,652
All Other Contributions
$1,551,206
Change in Net Assets
$512,775

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,958,440
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$12,246
Total Revenue per Audited Statements
$1,970,686
Total Revenue per Form 990
$1,958,440
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$773,207
Other Expenses$665,384
Total Fundraising Expense$52,106
Grants and Similar Amounts Paid$7,074
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$390,980$111,260$26,351$528,591
Conferences and Meetings$144,135$4,626$1,335$150,096
Current Officers, Directors, Trustees, and Key Employees$101,528$28,806$6,847$137,181
Fees for Services Other$126,507$3,383$39$129,929
Office Expenses$51,744$74,934$2,698$129,376
Travel$69,424$6,125$1,760$77,309
Payroll Taxes$46,085$12,162$3,164$61,411
Occupancy$32,588$16,356$2,196$51,140
Fees for Services Accounting-$50,330-$50,330
Other Employee Benefits$34,538$9,114$2,372$46,024
Advertising$18,674$2,807$222$21,703
Other Expenses$13,539$4,393$4,410$8,803
Information Technology$5,616$1,250$368$7,234
Grants to Domestic Individuals$7,074--$7,074
Insurance$5,107$1,170$344$6,621
Fees for Services Legal$4,864--$4,864
Total Functional Expenses$1,065,159$328,400$52,106$1,445,665

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,457,911
Expenses per Audited Statements$1,445,665
Total Expenses per Form 990$1,445,665
Expenses Not Reported on Form 990$12,246
Expenses Not Reported on Financial Statements$0
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$0
Fundraising Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Annual Patient Meeting$36,340---
Total Events$36,340---
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Payable$212,542
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
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
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 2

“Lisa salberg (ceo) is related to two board members adam salberg and lynn perry. All are family members.”

Form 990, Part VI, Section A, Line 8B

“The committees do not have the authority to act on behalf of the governing body.”

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

“A copy of the form 990 is provided to the governing body prior to filing with the internal revenue service.”

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

“Board members are required to review and acknowledge the organization's conflict of interest policy on an annual basis. Conflicts are managed by the board as situations arise.”

Form 990, Part VI, Section C, Line 19

“The organization makes its governing documents, conflict of interest policy and financial statements available to the public by written request.”

Filing and Contact Details

Filer

Filer Name
Hypertrophic Cardiomyopathy Association
EIN
41-1855605
Phone
9739837429
Address
66 FORD ROAD SUITE 213B, DENVILLE, NJ 07834

Signing Officer

Name
Robert Lorfink
Title
Treasurer
Phone
9739837429
Signed
2025-11-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Robert Lorfink
Formed
1996
Legal Domicile
Nj
Voting Board Members
12
Independent Board Members
11
Employees
17
Volunteers
107

Preparer

Firm
CONDON O'MEARA MCGINTY & DONNELLY LLP
Address
ONE BATTERY PARK PLAZA 7TH FL, NEW YORK, NY 10004
Preparer
Alexander Lazzaruolo
Phone
2126617777
Raw XML AppendixShowing 400 of 517 raw XML fields

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/ActivityOrMissionDesc0TO PROVIDE SUPPORT, ADVOCACY AND EDUCATION TO PATIENTS, FAMILIES, THE MEDICAL COMMUNITY AND THE PUBLIC ABOUT HYPERTROPHIC CARDIOMYOPATHY, WHILE SUPPORTING RESEARCH AND FOSTERING THE DEVELOPMENT OF TREATMENTS.
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IRS990/MissionDesc0TO PROVIDE SUPPORT, ADVOCACY AND EDUCATION TO PATIENTS, FAMILIES, THE MEDICAL COMMUNITY AND THE PUBLIC ABOUT HYPERTROPHIC CARDIOMYOPATHY, WHILE SUPPORTING RESEARCH AND FOSTERING THE DEVELOPMENT OF TREATMENTS.
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IRS990/ProgSrvcAccomActy2Grp/Desc0HCMA RECOGNIZED CENTER OF EXCELLENCE PROGRAM: HYPERTROPHIC CARDIOMYOPATHY IS A COMPLICATED DIAGNOSIS REQUIRING SPECIALIST MANAGEMENT STRATEGIES. HCM IMPACTS AN ESTIMATED ONE IN 250 PEOPLE IN THE GENERAL POPULATION. IT IS CURRENTLY SIGNIFICANTLY UNDERDIAGNOSED, WITH ONLY AN ESTIMATED 150,000 INDIVIDUALS IN THE UNITED STATES CURRENTLY IN TREATMENT FOR THE DISEASE. BECAUSE SEVERAL RELATED HCM SPECTRUM DISORDERSSUCH AS RASOPATHIES, CARDIAC AMYLOIDOSIS, FABRY DISEASE, AND DANON DISEASECAN MIMIC OR OVERLAP WITH HCM, ACCURATE DIFFERENTIAL DIAGNOSIS IS CRITICAL TO ENSURE THAT PATIENTS RECEIVE THE CORRECT TREATMENT AND MANAGEMENT STRATEGY. CARE FOR HCM REQUIRED MULTIPLE SUBSPECIALTY CARE MODALITIES, INCLUDING BUT NOT LIMITED TO IMAGING, CARDIOLOGY, INTERVENTIONAL CARDIOLOGY, ELECTROPHYSIOLOGY, CARDIAC SURGERY, GENETICS, PSYCHOSOCIAL SERVICES, AND CARDIAC OVERSIGHT FOR NONCARDIAC PROCEDURES, INCLUDING PREGNANCY, ORTHOPEDIC ISSUES, AND OTHER GENERAL MEDICAL NEEDS. THE HCMA HAS 56 RECOGNIZED CENTERS OF EXCELLENCE IN THE UNITED STATES, WITH 15 ADDITIONAL CENTERS UNDER REVIEW AND INTERNATIONAL PROGRAMMING BEING DEVELOPED. CREATION OF THESE PROGRAMS TAKES RELATIONSHIP BUILDING, PROGRAM BUILDING, AND ADMINISTRATIVE SUPPORT. PATIENTS CARED FOR IN THIS MODEL HAVE BETTER OUTCOMES THAN THOSE TREATED IN LOW-VOLUME CENTERS. THIS PROGRAM DIRECTLY LEADS TO PATIENT SAFETY AND OPTIMAL OUTCOMES.
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IRS990/ProgSrvcAccomActy3Grp/Desc0PATIENT EDUCATION BIGHEARTED WARRIOR TOUR PROGRAM: LAUNCHED IN 2020, THIS EDUCATIONAL SERIES BRINGS TOGETHER THOUGHT LEADERS IN HCM PATIENT CARE AND ADVOCACY TO LEARN COLLECTIVELY, SHARE EXPERIENCES, AND WORK TOWARD POSITIVE CHANGE. SINCE ITS INCEPTION, THE PROGRAM HAS OFFERED MORE THAN 60 WEBINARS AND FOUR IN-PERSON MEETINGS, COVERING A WIDE RANGE OF TOPICS INCLUDING PEDIATRICS, GENETICS, SURGERY, AND MORE. THESE PROGRAMS ARE FREE OF CHARGE AND ENSURE THAT EVERY PATIENT HAS ACCESS TO VITAL EDUCATIONAL OPPORTUNITIES, REGARDLESS OF THEIR GEOGRAPHIC LOCATION.
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