Civic Intelligence

Dysautonomia Foundation Inc DBA Familial Dysautonomia Foundation

990 • Fiscal year 2020 • EIN 13-6145280

Jan 01, 2020 to Dec 31, 2020 • Filed on Nov 15, 2021

Organization Profilewww.familialdysautonomia.org

View Organization Page

315 W 39th Street 701New York, NY 10018

(212) 279-1066

Siviq Scores

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

Liabilities / Assets

35th percentile

0.03x

Higher debt load relative to assets than 35% of similar nonprofits.

2020 filings • NTEE G • $1M-$5M nonprofits • Source year 2020

Liabilities / Revenue

28th percentile

0.03x

Higher debt load relative to revenue than 28% of similar nonprofits.

2020 filings • NTEE G • $1M-$5M nonprofits • Source year 2020

Net Margin

32nd percentile

-0.7%

Higher net margin than 32% of similar nonprofits.

2020 filings • NTEE G • $1M-$5M nonprofits • Source year 2020

Top Officer Pay

90th percentile

$253,428

Higher top officer pay than 90% of similar nonprofits.

Top officer pay equals 14.0% of source-year revenue.

2020 filings • NTEE G • $1M-$5M nonprofits • Source year 2020

Asset Growth

22nd percentile

-2.8%

Faster asset growth than 22% of similar nonprofits.

2020 filings • NTEE G • $1M-$5M nonprofits • Annualized from 2019 to 2020

Revenue Growth

77th percentile

27%

Faster revenue growth than 77% of similar nonprofits.

2020 filings • NTEE G • $1M-$5M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets35th percentile

Assets

Down

$1,809,411

Down $51,308 (-2.8%) from 2019

Net Assets

Down

$1,753,626

Down $107,093 (-5.8%) from 2019

Liabilities

Up

$55,785

Up $55,785 from 2019

Revenue And Expenses
Liabilities / Revenue28th percentileNet Margin32nd percentile

Revenue

Up

$1,813,432

Up $389,053 (+27%) from 2019

Expenses

Down

$1,826,476

Down $52,217 (-2.8%) from 2019

Net Income

Up

-$13,044

Up $441,270 (+97%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth22nd percentile

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

$6.0M$4.0M$2.0M$0Assets 2011: $4,116,432Liabilities 2011: $0Net Assets 2011: $4,116,4322011Assets 2012: $4,159,897Liabilities 2012: $0Net Assets 2012: $4,159,8972012Assets 2013: $3,521,461Liabilities 2013: $0Net Assets 2013: $3,521,4612013Assets 2014: $3,124,728Liabilities 2014: $0Net Assets 2014: $3,124,7282014Assets 2015: $2,595,265Liabilities 2015: $0Net Assets 2015: $2,595,2652015Assets 2016: $2,791,154Liabilities 2016: $0Net Assets 2016: $2,791,1542016Assets 2017: $2,077,052Liabilities 2017: $0Net Assets 2017: $2,077,0522017Assets 2018: $2,229,633Liabilities 2018: $0Net Assets 2018: $2,229,6332018Assets 2019: $1,860,719Liabilities 2019: $0Net Assets 2019: $1,860,7192019Assets 2020: $1,809,411Liabilities 2020: $55,785Net Assets 2020: $1,753,6262020Assets 2021: $2,301,553Liabilities 2021: $8,595Net Assets 2021: $2,292,9582021Assets 2022: $2,168,499Liabilities 2022: $139,650Net Assets 2022: $2,028,8492022Assets 2023: $1,503,412Liabilities 2023: $198,563Net Assets 2023: $1,304,8492023Assets 2024: $1,097,266Liabilities 2024: $263,573Net Assets 2024: $833,6932024

Highlighted filing

2020

Assets$1,809,411
Liabilities$55,785
Net Assets$1,753,626
Open 2020 Filing

Operations Trend

Revenue Growth77th percentile

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

$3.0M$2.0M$1.0M$0-$1.0MRevenue 2011: $1,858,724Expenses 2011: $1,616,096Net Income 2011: $242,6282011Revenue 2012: $1,984,331Expenses 2012: $2,039,181Net Income 2012: -$54,8502012Revenue 2013: $1,464,527Expenses 2013: $2,276,804Net Income 2013: -$812,2772013Revenue 2014: $1,921,666Expenses 2014: $2,297,530Net Income 2014: -$375,8642014Revenue 2015: $1,261,736Expenses 2015: $1,672,655Net Income 2015: -$410,9192015Revenue 2016: $1,719,922Expenses 2016: $1,626,677Net Income 2016: $93,2452016Revenue 2017: $1,713,284Expenses 2017: $2,427,386Net Income 2017: -$714,1022017Revenue 2018: $1,984,961Expenses 2018: $1,760,177Net Income 2018: $224,7842018Revenue 2019: $1,424,379Expenses 2019: $1,878,693Net Income 2019: -$454,3142019Revenue 2020: $1,813,432Expenses 2020: $1,826,476Net Income 2020: -$13,0442020Revenue 2021: $2,387,593Expenses 2021: $1,850,796Net Income 2021: $536,7972021Revenue 2022: $1,577,517Expenses 2022: $1,830,056Net Income 2022: -$252,5392022Revenue 2023: $1,215,749Expenses 2023: $1,940,535Net Income 2023: -$724,7862023Revenue 2024: $1,558,104Expenses 2024: $2,029,315Net Income 2024: -$471,2112024

Highlighted filing

2020

Revenue$1,813,432
Expenses$1,826,476
Net Income-$13,044
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2020 to Dec 31, 2020
Signed
Nov 15, 2021
Return Version
2020v4.0
Gross Receipts
$1,821,293
Mission and Program Overview

Mission

The dysautonomia foundation supports and operates programs focused on the medical care, research, social services, and public education for the benefit of people affected by or at risk for familial dysautonomia fd.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$419,350$499,243▲ $79,893
Land, Buildings, and Equipment, Net$42,605$28,295▼ $14,310
Prepaid Expenses and Deferred Charges-$13,278-
Savings and Temporary Cash Investments-$0-
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$1,860,719$1,809,411▼ $51,308
Other Assets Total$1,398,764$1,268,595▼ $130,169
Liabilities
Other Liabilities-$55,785-
Total Liabilities$0$55,785▲ $55,785
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,860,719$1,753,626▼ $107,093
Total Net Assets Fund Balance$1,860,719$1,753,626▼ $107,093
Total Liabilities and Net Assets / Fund Balance$1,860,719$1,809,411▼ $51,308

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$26,145$41,105$67,250
Leasehold Improvements$2,150$2,150$4,300
Compensation and Service Providers
Top Officer Pay90th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Lanie EtkindExecutive DirectorFT$207,538$45,890$253,428

Board Members and Trustees

NameTitle
Faye GinsburgPresident
Edward BaranoffVice President
Jeffrey GoldbergerVice President
Laurent LandauVice President
Lisa NewmanVice President
Paul B WexlerVice President
Steven KietzVice President
Gerald AdlerDirector
Howard WeiserDirector
Jennifer SonensheinDirector
Steven S FassSecretary
Allan CohenTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,042,273
Program Service Revenue
$0
Investment Income
$6,514
Other Revenue
$764,645
All Other Contributions
$1,042,273
Change in Net Assets
$-13,044
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$1,194,451
Salaries, Compensation, and Employee Benefits$365,248
Other Expenses$266,777
Total Fundraising Expense$55,755
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,194,451--$1,194,451
Current Officers, Directors, Trustees, and Key Employees$147,329$59,852$23,020$230,201
Other Salaries and Wages$57,490$23,357$8,983$89,830
Fees for Services Other$35,097$7,815$1,500$44,412
Occupancy$17,502$16,950$3,390$37,842
Fees for Services Legal$32,783--$32,783
Fees for Services Accounting-$31,667-$31,667
Office Expenses$10,312$12,890$2,578$25,780
Other Employee Benefits$14,619$5,939$2,285$22,843
Payroll Taxes$13,074$5,312$2,043$20,429
Conferences and Meetings$16,872$97$1,436$18,405
Depreciation Depletion$2,768$3,460$8,082$14,310
Insurance$1,236$4,973$309$6,518
All Other Expenses$2,235$685$125$3,045
Other Expenses$2,332$225$285$2,842
Travel$517$1,884$55$2,456
Pension Plan Contributions$1,245$506$194$1,945
Advertising$348$123$25$496
Total Functional Expenses$1,587,731$182,990$55,755$1,826,476
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Nyu School of MedicineNew York, NY-Research & Treatment$1,108,912
Autonomic Research LLCNew York, NY-Research & Treatment$85,539
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$677,626
Fundraising Direct Expenses$7,861
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Crowdfunding$235,867$235,867-$235,867
Tilsit Fund$142,116$142,116-$142,116
Total Events$677,626$677,626$7,861$669,765
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-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Sba Ppp Loan$54,491
Payroll Liabilities$1,152
Credit Acrd$142
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 11B: Form 990 Review Process

“The organization's form 990 is reviewed by the executive director, the treasurer, the president and an independent accountant prior to filing. The form 990 is made available to all directors.”

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

“All directors are required to sign an annual compliance agreement.”

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

“Compensation process for top official compensation is determined initially by a committee that establishes an employment contract. It is subsequently adjusted by the committee according to cost of living, perfpormance increases and comparison to comparable industry levels.”

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

“Governing documents disclosure explanation documents are made available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
Dysautonomia Foundation Inc
EIN
13-6145280
Phone
2122791066
Address
315 W 39TH STREET 701, NEW YORK, NY 10018

Signing Officer

Name
Allan Cohen
Title
Treasurer
Signed
2021-11-15
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Allan Cohen
Formed
1954
Legal Domicile
Ny
Voting Board Members
13
Independent Board Members
14
Employees
3

Preparer

Firm
Effy Steigman & Co Cpas Pc
Address
505 CROWN ST, BROOKLYN, NY 11213-5126
Preparer
Effy Steigman
Phone
3475337210
Supplemental Narrative

Financial Statement Notes

Part X : FIN48 Footnote

“Tax Uncertainties - The Organization accounts for income taxes in accordance with the income tax accounting guidance, as set forth in FASB ASC Topic 740, Income Taxes, which requires that tax positions initially need to be recognized in the financial statements when it is more likely than not that the positions will be sustained upon examination by the tax authorities. It also provides guidance for derecognition, classification, interest and penalties, accounting in interim periods, disclosure and transition. As of December 31, 2020, the Organization had no uncertain tax positions that qualify for either recognition or disclosure in the financial statements. The Organization's policy is to record interest expense and penalties related to income taxes as operating expenses.”

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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
$1,809,411
Liabilities
$55,785
Net assets
$1,753,626
Revenue
$1,813,432
Expenses
$1,826,476
Net income
-$13,044
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.10$0.26$0.83$1.56$2.03$0.47
2023Summary only. Only limited summary data is available for this year.$1.50$0.20$1.30$1.22$1.94$0.72
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.17$0.14$2.03$1.58$1.83$0.25
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.30$0.01$2.29$2.39$1.85$0.54
2020Detailed filing. Detailed filing data is available for this year.$1.81$0.06$1.75$1.81$1.83$0.01
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.86$0.00$1.86$1.42$1.88$0.45
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.23$0.00$2.23$1.98$1.76$0.22
2017Summary only. Only limited summary data is available for this year.$2.08$0.00$2.08$1.71$2.43$0.71
2016Summary only. Only limited summary data is available for this year.$2.79$0.00$2.79$1.72$1.63$0.09
2015Summary only. Only limited summary data is available for this year.$2.60$0.00$2.60$1.26$1.67$0.41
2014Summary only. Only limited summary data is available for this year.$3.12$0.00$3.12$1.92$2.30$0.38
2013Summary only. Only limited summary data is available for this year.$3.52$0.00$3.52$1.46$2.28$0.81
2012Summary only. Only limited summary data is available for this year.$4.16$0.00$4.16$1.98$2.04$0.05
2011Summary only. Only limited summary data is available for this year.$4.12$0.00$4.12$1.86$1.62$0.24
Peer Organizations

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