Nonprofit · EIN 41-1855605
HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION
Tax-exempt (reinstated) · DENVILLE, NJ 07834
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $1,958,440 | $1,445,665 | $512,775 | $2,036,007 | $371,272 | $1,664,735 |
| December 31, 2023 | 990 | $1,326,262 | $1,080,476 | $245,786 | $1,398,852 | $246,892 | $1,151,960 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $1,797,244
- Membership dues
- $209,698
- Program service revenue
- $91,365
- Investment income
- $66,179
- Net gain from sales of assets
- -$436
- Net income from sales of inventory
- $2,071
- Other revenue
- $3,652
Expenses
- Grants and similar amounts paid
- $7,074
- Compensation of officers, directors and key employees
- $137,181
- Other salaries and wages
- $528,591
- Salaries, compensation and benefits (total)
- $773,207
- Professional fundraising fees
- $0
- Legal fees
- $4,864
- Accounting fees
- $50,330
- Occupancy
- $51,140
- Travel
- $77,309
- Program services (functional)
- $1,065,159
- Management and general (functional)
- $328,400
- Fundraising (functional)
- $52,106
Balance sheet and other
- Total assets, start of year
- $1,398,852
- Total assets, end of year
- $2,036,007
- Total liabilities, end of year
- $371,272
- Net assets, end of year
- $1,664,735
- Publicly traded securities
- $127,942
- Net assets without donor restrictions
- $1,175,483
- Net assets with donor restrictions
- $489,252
- Gross receipts
- $1,968,876
- Employees
- 17
- Volunteers
- 107
- Year formed
- 1996
- State of legal domicile
- NJ
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| LISA SALBERG | CEO/VICE CHAIR Trustee or director, Officer | 40 | $131,703 | $5,480 |
| GORDON FOX PHD | CHAIR Trustee or director, Officer | 15 | $0 | $0 |
| ADAM SALBERG | SECRETARY Trustee or director, Officer | 1 | $0 | $0 |
| ROB LORFINK | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| BILLUR DOWSE | DIRECTOR Trustee or director | 5 | $0 | $0 |
| ROSEMARY CONLON | DIRECTOR Trustee or director | 5 | $0 | $0 |
| MARTIN MARON MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MIKE LYNCH MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KEVIN O'CONNOR MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| ISAAC RODRIGUEZ-CHAVEZ PHD MH | DIRECTOR Trustee or director | 1 | $0 | $0 |
| BILL ROSSI | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AMIT KALIA PHD | DIRECTOR Trustee or director | 1 | $0 | $0 |
990 for the year ended December 31, 2023: 13 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| LISA SALBERG | CEO/VICE CHAIR Trustee or director, Officer | 40 | $98,908 | $6,092 |
| GORDON FOX PHD | CHAIR Trustee or director, Officer | 10 | $0 | $0 |
| ADAM SALBERG | SECRETARY Trustee or director, Officer | 1 | $0 | $0 |
| ROB LORFINK | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| AMIT KALIA PHD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ROSEMARY CONLON | DIRECTOR Trustee or director | 1 | $0 | $0 |
| BILLUR DOWSE | DIRECTOR Trustee or director | 10 | $0 | $0 |
| MARTIN MARON MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MIKE LYNCH MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| KEVIN O'CONNOR MD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| ISAAC RODRIGUEZ-CHAVEZ PHD MHS MS | DIRECTOR Trustee or director | 1 | $0 | $0 |
| BILL ROSSI | DIRECTOR Trustee or director | 1 | $0 | $0 |
| RICHARD MELIA PHD EMERITUS | DIRECTOR Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 66 FORD RD STE 213B, DENVILLE, NJ 07834-1300
- In care of
- % LISA SALBERG
- Principal officer (990 for 2024)
- ROBERT LORFINK, 66 FORD ROAD SUITE 213B, DENVILLE, NJ 07834
- Signed the 990
- ROBERT LORFINK, TREASURER
- Phone
- (973) 983-7429
- Website
- WWW.4HCM.ORG
- Return prepared by
- CONDON O'MEARA MCGINTY & DONNELLY LLP
Mission
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.
Program accomplishments
- HCMA PATIENT INTAKE AND NAVIGATION SERVICES:THE HCMA ALLOWS EACH INDIVIDUAL DIAGNOSED WITH THE CONDITION TO CONTACT THE OFFICE (PHONE, EMAIL , IN PERSON, OR ONLINE THROUGH VIDEO CONFERENCING) AND PARTICIPATE IN AN INTAKE CALL, WHICH THEN ALLOWS FOR UNDERSTANDING WHERE THE INDIVIDUAL IS COMING TO US REGARDING THEIR DISEASE PROCESS, ACCESS TO SPECIALTY CARE, EMOTIONAL SUPPORT, ADVOCACY SERVICES, AND MORE. THIS IS A VERY LABOR-INTENSIVE PORTION OF OUR WORK, REQUIRING INDIVIDUAL COMMUNICATION AND FOLLOW-UP. WE HAVE USED THIS MODEL OF SERVICE SINCE OUR FOUNDING IN 1996. IT HAS EVOLVED AS THE ORGANIZATION HAS, AND TO DATE, 20,000 INDIVIDUALS HAVE PARTICIPATED IN THE PROCESS.Expenses $164,854 · grants $7,074 · revenue $95,017
- HCMA 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.Expenses $123,650
- PATIENT 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.Expenses $40,942
- Expenses $735,713
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 41-1855605
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2015
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G43)
- Assets (IRS master file)
- $2,036,007
- Income (IRS master file)
- $1,968,876
Revocation and reinstatement
- Exemption revoked
- May 15, 2014
- Posted by the IRS
- August 11, 2014
- Reinstated
- Effective May 15, 2014
From the IRS automatic revocation list: organizations that did not file a required return or e-Postcard for three consecutive years.
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $1,958,440 | $1,445,665 | $2,036,007 | IRS |
| 990 | December 2023 | $1,326,262 | $1,080,476 | $1,398,852 | XML |
| 990 | December 2022 | $1,106,885 | $796,317 | $1,085,584 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990 | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 41-1855605).
Questions about HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION
- What is the EIN of HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION?
- The employer identification number (EIN) of HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION is 41-1855605.
- Is HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION tax-exempt?
- Yes. The IRS revoked its exemption on May 15, 2014 and reinstated it effective May 15, 2014.
- Are donations to HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION?
- The 990 for the year ended December 31, 2024 names ROBERT LORFINK.
- Who are the officers and directors of HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION?
- The 990 for the year ended December 31, 2024 lists 12 people; 1 received compensation from the organization, the highest $131,703 (LISA SALBERG, CEO/VICE CHAIR).
- How much revenue does HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $1,958,440, expenses of $1,445,665 and total assets of $2,036,007 at year end.
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