Civic Intelligence

Hereditary Disease Foundation

990 • Fiscal year 2020 • EIN 23-7376197

Jan 01, 2020 to Dec 31, 2020 • Filed on Dec 23, 2021

Organization Profilehdfoundation.com

View Organization Page

601 West 168th Street 54New York, NY 10032

(212) 981-2121

Siviq Scores

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

Liabilities / Assets

38th percentile

0.11x

Higher debt load relative to assets than 38% of similar nonprofits.

2020 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2020

Liabilities / Revenue

62nd percentile

0.44x

Higher debt load relative to revenue than 62% of similar nonprofits.

2020 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2020

Net Margin

87th percentile

38%

Higher net margin than 87% of similar nonprofits.

2020 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2020

Top Officer Pay

26th percentile

$110,000

Higher top officer pay than 26% of similar nonprofits.

Top officer pay equals 2.7% of source-year revenue.

2020 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2020

Asset Growth

79th percentile

24%

Faster asset growth than 79% of similar nonprofits.

2020 filings • 501(c)3 • $10M-$25M nonprofits • Annualized from 2019 to 2020

Revenue Growth

94th percentile

100%

Faster revenue growth than 94% of similar nonprofits.

2020 filings • 501(c)3 • $10M-$25M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets38th percentile

Assets

Up

$15,507,063

Up $3,049,347 (+24%) from 2019

Net Assets

Up

$13,725,455

Up $2,408,745 (+21%) from 2019

Liabilities

Up

$1,781,608

Up $640,602 (+56%) from 2019

Revenue And Expenses
Liabilities / Revenue62nd percentileNet Margin87th percentile

Revenue

Up

$4,059,819

Up $2,031,834 (+100%) from 2019

Expenses

Up

$2,519,661

Up $217,830 (+9.5%) from 2019

Net Income

Up

$1,540,158

Up $1,814,004 (+662%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth79th percentile

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

$30M$20M$10M$0Assets 2011: $9,436,673Liabilities 2011: $596,220Net Assets 2011: $8,840,4532011Assets 2014: $11,378,074Liabilities 2014: $600,178Net Assets 2014: $10,777,8962014Assets 2015: $11,110,344Liabilities 2015: $531,930Net Assets 2015: $10,578,4142015Assets 2016: $11,731,003Liabilities 2016: $565,743Net Assets 2016: $11,165,2602016Assets 2017: $11,878,583Liabilities 2017: $1,406,338Net Assets 2017: $10,472,2452017Assets 2018: $10,922,906Liabilities 2018: $844,715Net Assets 2018: $10,078,1912018Assets 2019: $12,457,716Liabilities 2019: $1,141,006Net Assets 2019: $11,316,7102019Assets 2020: $15,507,063Liabilities 2020: $1,781,608Net Assets 2020: $13,725,4552020Assets 2021: $18,145,612Liabilities 2021: $2,330,017Net Assets 2021: $15,815,5952021Assets 2022: $16,776,193Liabilities 2022: $1,380,514Net Assets 2022: $15,395,6792022Assets 2023: $18,234,308Liabilities 2023: $3,091,412Net Assets 2023: $15,142,8962023Assets 2024: $21,978,294Liabilities 2024: $2,828,419Net Assets 2024: $19,149,8752024

Highlighted filing

2020

Assets$15,507,063
Liabilities$1,781,608
Net Assets$13,725,455
Open 2020 Filing

Operations Trend

Revenue Growth94th percentile

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

$10M$5.0M$0-$5.0MExpenses 2011: $2,092,8612011Revenue 2014: $4,209,947Expenses 2014: $1,848,087Net Income 2014: $2,361,8602014Revenue 2015: $2,358,172Expenses 2015: $1,887,144Net Income 2015: $471,0282015Revenue 2016: $2,289,333Expenses 2016: $2,049,110Net Income 2016: $240,2232016Revenue 2017: $1,074,269Expenses 2017: $2,547,618Net Income 2017: -$1,473,3492017Revenue 2018: $2,691,357Expenses 2018: $2,137,659Net Income 2018: $553,6982018Revenue 2019: $2,027,985Expenses 2019: $2,301,831Net Income 2019: -$273,8462019Revenue 2020: $4,059,819Expenses 2020: $2,519,661Net Income 2020: $1,540,1582020Revenue 2021: $3,846,649Expenses 2021: $2,967,624Net Income 2021: $879,0252021Revenue 2022: $4,522,686Expenses 2022: $2,603,305Net Income 2022: $1,919,3812022Revenue 2023: $2,578,841Expenses 2023: $4,738,635Net Income 2023: -$2,159,7942023Revenue 2024: $7,899,221Expenses 2024: $4,524,145Net Income 2024: $3,375,0762024

Highlighted filing

2020

Revenue$4,059,819
Expenses$2,519,661
Net Income$1,540,158
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2020 to Dec 31, 2020
Signed
Dec 23, 2021
Return Version
2020v4.0
Gross Receipts
$6,567,299
Mission and Program Overview

Mission

To fund innovative research towards curing huntington's disease and impacting other brain disorders.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$11,198,150$12,384,273▲ $1,186,123
Savings and Temporary Cash Investments$891,676$2,379,491▲ $1,487,815
Pledges and Grants Receivable$24,309$416,443▲ $392,134
Cash and Non-Interest-Bearing Accounts$258,816$272,171▲ $13,355
Land, Buildings, and Equipment, Net$64,422$44,817▼ $19,605
Prepaid Expenses and Deferred Charges$20,343$9,868▼ $10,475
Accounts Receivable-$0-
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-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$12,457,716$15,507,063▲ $3,049,347
Other Assets Total-$0-
Liabilities
Grants Payable$1,123,506$1,768,438▲ $644,932
Accounts Payable and Accrued Expenses$17,500$13,170▼ $4,330
Total Liabilities$1,141,006$1,781,608▲ $640,602
Net Assets / Fund Balance
Net Assets With Donor Restrictions$9,803,171$10,585,495▲ $782,324
Net Assets Without Donor Restrictions$1,513,539$3,139,960▲ $1,626,421
Total Net Assets Fund Balance$11,316,710$13,725,455▲ $2,408,745
Total Liabilities and Net Assets / Fund Balance$12,457,716$15,507,063▲ $3,049,347

Asset Categories

AssetBook ValueDepreciationBasis
Leasehold Improvements$44,817$53,205-

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2020$9,703,171-▲ $1,026,040$485,159$10,244,052
2019$8,534,335-▲ $1,595,553$426,717$9,703,171
2018$8,401,672$676,151▼ $543,488-$8,534,335
2017$7,700,419-▲ $1,155,712$454,459$8,401,672
2016$7,566,144-▲ $580,315$446,040$7,700,419
Compensation and Service Providers
Top Officer Pay26th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Meghan DonaldsonCEOPT$110,000$110,000
Travis CareyCFO-$15,030$15,030

Board Members and Trustees

NameTitle
David ZwallyChair
Nancy Wexler PhDPresident
Anne Young MD PhDVice Chair
Barry EvenchickDirector
Berta GehryDirector
David Gerstenhaber thru 920Director
David Housman PhDDirector
Frank GehryDirector
Herbert Pardes MDDirector
Joan LeimanDirector
Karen NewmanDirector
Kelly Posner Gerstenhaber PhDDirector
Robi BlumensteinDirector
Sandy FoxDirector
Alice Wexler PhDSecretary
Bruce DonaldsonTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,654,196
Program Service Revenue
$0
Investment Income
$387,663
Other Revenue
$17,960
All Other Contributions
$3,571,436
Change in Net Assets
$1,540,158

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,992,516
Revenue Not Reported on Financial Statements
$67,303
Revenue Not Reported on Form 990
$968,587
Total Revenue per Audited Statements
$4,961,103
Total Revenue per Form 990
$4,059,819
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$1,782,780
Salaries, Compensation, and Employee Benefits$364,606
Other Expenses$304,275
Total Fundraising Expense$186,206
Professional Fundraising Fees$68,000

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,263,008--$1,263,008
Foreign Grants$419,772--$419,772
Other Salaries and Wages$137,600$3,775$30,625$172,000
Current Officers, Directors, Trustees, and Key Employees$55,000$48,030$22,000$125,030
Fees for Services Other$45,435$28,000$27,300$100,735
Grants to Domestic Individuals$100,000--$100,000
Fees for Services Professional Fundraising--$68,000$68,000
Fees for Service Investment Mgmnt Fees-$67,303-$67,303
Occupancy$37,122$6,134$10,444$53,700
Other Employee Benefits$29,573$9,904$6,553$46,030
Payroll Taxes$15,940$2,074$3,532$21,546
Depreciation Depletion$14,504$1,887$3,214$19,605
Information Technology$12,850$1,672$2,846$17,368
Office Expenses-$8,754-$8,754
Conferences and Meetings$8,167$354$125$8,646
Insurance$5,304$691$1,175$7,170
Other Expenses$1,697$285$850$2,832
Total Functional Expenses$2,146,127$187,328$186,206$2,519,661

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,552,358
Total Expenses per Form 990$2,519,661
Expenses per Audited Statements$2,452,358
Expenses Not Reported on Form 990$100,000
Expenses Not Reported on Financial Statements$67,303
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
The Trustees Of Columbia UniNew York, NY--$150,000
UT Southwestern MedicalCenterDallas, TX--$137,036
Ludwig Inst for Cancer ReseaNew York, NY--$129,056
Massachusetts General HospBoston, MA--$126,536
University Mass Medical SchWorcester, MA--$120,380
California Institute of TechPasadena, CA--$75,000
Columbia University Med CtrNew York, NY--$75,000
Mass Institute of TechnologyCambridge, MA--$75,000
New York Genome Center IncNew York, NY--$75,000
Univ of California IrvineIrvine, CA--$75,000
University of CalifonriaOakland, CA--$75,000
University of RochesterRochester, NY--$75,000
Whitehead InstituteCambridge, MA--$75,000

International Summary

Spending
$419,772

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
CanadaGrants to recipientsScientific Research00$202,652
SpainGrants to recipientsScientific Research00$75,000
SwedenGrants to recipientsScientific Research00$75,000
United KingdomGrants to recipientsScientific Research00$67,120
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
Yes

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$68,000

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
FR events$82,760---
Total Events$82,760---
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
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
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
Yes
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, Line 2: Description of Business or Family Relationship of Officers, Directors, Et

“Nancy Wexler, President, and Alice Wexler, Secretary, are sisters and both are members of the board of directors.Meghan Donaldson, CEO, and Bruce Donaldson, Board Member, are married and are both members of the board of directors. Kelly Posner Gerstenhaber and David Gerstenhaber are married and both are members of the board of directors.Frank Gehry and Berta Gehry are married and both are members of the board of directors.Sandy Fox is the aunt of David Zwally and both are members of the board of directors.”

Form 990, Part VI, Line 11B: Form 990 Review Process

“The Foundation provides the 990 to the board of directors for approval.”

Form 990, Part VI, Line 12C: Explanation of Monitoring and Enforcement of Conflicts

“Annual conflict of interest statements are circulated to all officers, directors, and key employees at the board of directors meeting. Management maintains signed copies of these statements for all such individuals to ensure compliance with this policy.”

Form 990, Part VI, Line 15A: Compensation Review & Approval Process - CEO, Top Management

“A written employee contract is established and approved by the board or compensation committee.”

Form 990, Part VI, Line 19: Other Organization Documents Publicly Available

“The Foundation makes its financial statements and 990 available to the public on its website, www.hdfoundation.org. The Foundation makes its governing documents and conflicts of interest policy available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
Hereditary Disease Foundation
EIN
23-7376197
Phone
2129812121
Address
601 West 168th Street 54, New York, NY 10032

Signing Officer

Name
Meghan Donaldson
Title
CEO
Signed
2021-12-23
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Meghan Donaldson
Formed
1968
Legal Domicile
CA
Voting Board Members
16
Independent Board Members
15
Employees
3
Volunteers
1

Preparer

Firm
Schall & Ashenfarb Cpas
Address
307 5th Ave 15th Floor, NEW YORK, NY 10016
Preparer
Michael Schall
Phone
2122682800
Supplemental Narrative

Financial Statement Notes

Part V, Line 4: Intended uses of the endowment fund.

“HDF intends to use the endowment funds for its scientific activities which includes grants to fund scientific research to further the understanding of, and to develop diagnostics and therapeutics for, neurodegenerative diseases, including Huntington's Disease.”

Part X : FIN48 Footnote

“HDF does not believe its financial statements include any material, uncertain tax positions. Tax filings for the periods ending December 31, 2017 and later are subject to examination by applicable taxing authorities.”

Raw XML AppendixShowing 400 of 789 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/Desc0The Hereditary Disease Foundation commemorates its 52nd year by making an even greater impact toward developing novel therapeutics and cures. We have put in place strategies and new grant funding programs to maximize our effectiveness. We have been funding catalytic and paradigm-changing research since our birth - including identifying the Huntington's Disease marker in 1983 and the HD Gene in 1993, and supporting gene silencing approaches since 2002. We want to continue to make an impact by funding research that pushes the envelope.The Hereditary Disease Foundation provides funding for research that advances the discovery and development of treatments for Huntington's Disease and other brain disorders. We are passionate about funding and the Foundation intends to use the endowment funds for its scientific activities which includes providing grants to fund scientific research to further the understanding of, and to develop diagnostics and therapeutics for neurodegenerative diseases, including Huntington's Disease. The Hereditary Disease Foundation funds the most innovative, creative and paradigm-changing research possible. The data generated with HDF funding often allows researchers to get initial findings that help them apply successfully for larger, long-term funding from other funding agencies, including the National Institutes of Health. The Foundation's current focus is on:1) Modifier Studies - On DNA repair pathways, protein degradation and other modifiers of phenotype and age of onset.2) Research mechanisms of HD neurogeneration and biomarkers and therapy for HD-induced neurodegeneration.Type of funding:The Basic Research Grants Program: Supports projects contributing to identifying and understanding the fundamental defects in Huntington's Disease. Postdoctoral Fellowships: These postdoctoral fellowships are intended to cultivate interest in Huntington's Disease research by bright young scientists. Fellowships are granted to those who possess imagination, rigor, creativity and spirit to push forward toward a cure for HD and ensure that these learning can be applied to other brain diseases.
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IRS990/Form990PartVIISectionAGrp/PersonNm3Alice Wexler PhD
IRS990/Form990PartVIISectionAGrp/PersonNm4Bruce Donaldson
IRS990/Form990PartVIISectionAGrp/PersonNm5David Zwally
IRS990/Form990PartVIISectionAGrp/PersonNm6Anne Young MD PhD
IRS990/Form990PartVIISectionAGrp/PersonNm7Berta Gehry
IRS990/Form990PartVIISectionAGrp/PersonNm8Frank Gehry
IRS990/Form990PartVIISectionAGrp/PersonNm9David Gerstenhaber thru 920
IRS990/Form990PartVIISectionAGrp/PersonNm10Kelly Posner Gerstenhaber PhD
IRS990/Form990PartVIISectionAGrp/PersonNm11Barry Evenchick
IRS990/Form990PartVIISectionAGrp/PersonNm12David Housman PhD
IRS990/Form990PartVIISectionAGrp/PersonNm13Joan Leiman
IRS990/Form990PartVIISectionAGrp/PersonNm14Karen Newman
IRS990/Form990PartVIISectionAGrp/PersonNm15Herbert Pardes MD
IRS990/Form990PartVIISectionAGrp/PersonNm16Robi Blumenstein
IRS990/Form990PartVIISectionAGrp/PersonNm17Sandy Fox
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IRS990/Form990PartVIISectionAGrp/TitleTxt3Secretary
IRS990/Form990PartVIISectionAGrp/TitleTxt4Treasurer
IRS990/Form990PartVIISectionAGrp/TitleTxt5Chair
IRS990/Form990PartVIISectionAGrp/TitleTxt6Vice Chair
IRS990/Form990PartVIISectionAGrp/TitleTxt7Director
IRS990/Form990PartVIISectionAGrp/TitleTxt8Director
IRS990/Form990PartVIISectionAGrp/TitleTxt9Director
IRS990/Form990PartVIISectionAGrp/TitleTxt10Director
IRS990/Form990PartVIISectionAGrp/TitleTxt11Director
IRS990/Form990PartVIISectionAGrp/TitleTxt12Director
IRS990/Form990PartVIISectionAGrp/TitleTxt13Director
IRS990/Form990PartVIISectionAGrp/TitleTxt14Director
IRS990/Form990PartVIISectionAGrp/TitleTxt15Director
IRS990/Form990PartVIISectionAGrp/TitleTxt16Director
IRS990/Form990PartVIISectionAGrp/TitleTxt17Director
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IRS990/MaterialDiversionOrMisuseInd0false
IRS990/MembersOrStockholdersInd0false
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IRS990/MinutesOfCommitteesInd0true
IRS990/MinutesOfGoverningBodyInd0true
IRS990/MissionDesc0To fund innovative research towards curing Huntington's disease and impacting other brain disorders.
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Document Assets

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Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$15,507,063
Liabilities
$1,781,608
Net assets
$13,725,455
Revenue
$4,059,819
Expenses
$2,519,661
Net income
$1,540,158
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$22.0$2.83$19.1$7.90$4.52$3.38
2023Detailed filing. Detailed filing data is available for this year.$18.2$3.09$15.1$2.58$4.74$2.16
2022Detailed filing. Detailed filing data is available for this year.$16.8$1.38$15.4$4.52$2.60$1.92
2021Detailed filing. Detailed filing data is available for this year.$18.1$2.33$15.8$3.85$2.97$0.88
2020Detailed filing. Detailed filing data is available for this year.$15.5$1.78$13.7$4.06$2.52$1.54
2019Detailed filing. Detailed filing data is available for this year.$12.5$1.14$11.3$2.03$2.30$0.27
2018Detailed filing. Detailed filing data is available for this year.$10.9$0.84$10.1$2.69$2.14$0.55
2017Detailed filing. Detailed filing data is available for this year.$11.9$1.41$10.5$1.07$2.55$1.47
2016Detailed filing. Detailed filing data is available for this year.$11.7$0.57$11.2$2.29$2.05$0.24
2015Detailed filing. Detailed filing data is available for this year.$11.1$0.53$10.6$2.36$1.89$0.47
2014Detailed filing. Detailed filing data is available for this year.$11.4$0.60$10.8$4.21$1.85$2.36
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$9.44$0.60$8.84$2.09