Civic Intelligence

Huntington Study Group Ltd.

990 • Fiscal year 2022 • EIN 45-5557987

Jan 01, 2022 to Dec 31, 2022 • Filed on Nov 13, 2023

Organization ProfileWWW.HUNTINGTONSTUDYGROUP.ORG

View Organization Page

95 Allens Creek Bldg 1 132Rochester, NY 14618

(800) 487-7671

Siviq Scores

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

Liabilities / Assets

70th percentile

0.32x

Higher debt load relative to assets than 70% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Liabilities / Revenue

71st percentile

0.41x

Higher debt load relative to revenue than 71% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Net Margin

32nd percentile

-0.2%

Higher net margin than 32% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Top Officer Pay

85th percentile

$256,547

Higher top officer pay than 85% of similar nonprofits.

Top officer pay equals 3.8% of source-year revenue.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Asset Growth

11th percentile

-15%

Faster asset growth than 11% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2021 to 2022

Revenue Growth

12th percentile

-32%

Faster revenue growth than 12% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2021 to 2022

Balance Sheet
Liabilities / Assets70th percentile

Assets

Down

$8,704,616

Down $1,547,284 (-15%) from 2021

Net Assets

Down

$5,920,866

Down $594,911 (-9.1%) from 2021

Liabilities

Down

$2,783,750

Down $952,373 (-25%) from 2021

Revenue And Expenses
Liabilities / Revenue71st percentileNet Margin32nd percentile

Revenue

Down

$6,746,002

Down $3,221,494 (-32%) from 2021

Expenses

Down

$6,756,731

Down $2,334,790 (-26%) from 2021

Net Income

Down

-$10,729

Down $886,704 (-101%) from 2021

Historical Trend

Balance Sheet Trend

Asset Growth11th percentile

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

$15M$10M$5.0M$0-$5.0MAssets 2012: $122,118Liabilities 2012: $139,106Net Assets 2012: -$16,9882012Assets 2013: $1,388,134Liabilities 2013: $411,332Net Assets 2013: $976,8022013Assets 2014: $2,418,412Liabilities 2014: $945,756Net Assets 2014: $1,472,6562014Assets 2015: $4,189,297Liabilities 2015: $1,573,697Net Assets 2015: $2,615,6002015Assets 2016: $5,486,806Liabilities 2016: $2,416,198Net Assets 2016: $3,070,6082016Assets 2017: $5,438,462Liabilities 2017: $2,210,913Net Assets 2017: $3,227,5492017Assets 2018: $5,832,539Liabilities 2018: $2,562,999Net Assets 2018: $3,269,5402018Assets 2019: $7,722,690Liabilities 2019: $3,859,881Net Assets 2019: $3,862,8092019Assets 2020: $7,657,910Liabilities 2020: $2,461,013Net Assets 2020: $5,196,8972020Assets 2021: $10,251,900Liabilities 2021: $3,736,123Net Assets 2021: $6,515,7772021Assets 2022: $8,704,616Liabilities 2022: $2,783,750Net Assets 2022: $5,920,8662022Assets 2023: $8,173,182Liabilities 2023: $1,899,350Net Assets 2023: $6,273,8322023Assets 2024: $8,061,578Liabilities 2024: $1,232,734Net Assets 2024: $6,828,8442024

Highlighted filing

2022

Assets$8,704,616
Liabilities$2,783,750
Net Assets$5,920,866
Open 2022 Filing

Operations Trend

Revenue Growth12th percentile

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

$15M$10M$5.0M$0-$5.0MRevenue 2012: $56,045Expenses 2012: $73,033Net Income 2012: -$16,9882012Revenue 2013: $3,735,270Expenses 2013: $2,741,480Net Income 2013: $993,7902013Revenue 2014: $6,987,372Expenses 2014: $6,491,518Net Income 2014: $495,8542014Revenue 2015: $7,564,038Expenses 2015: $6,375,601Net Income 2015: $1,188,4372015Revenue 2016: $9,461,750Expenses 2016: $9,087,801Net Income 2016: $373,9492016Revenue 2017: $8,183,725Expenses 2017: $8,176,383Net Income 2017: $7,3422017Revenue 2018: $9,752,778Expenses 2018: $9,546,664Net Income 2018: $206,1142018Revenue 2019: $13,110,561Expenses 2019: $12,788,592Net Income 2019: $321,9692019Revenue 2020: $11,167,411Expenses 2020: $10,180,312Net Income 2020: $987,0992020Revenue 2021: $9,967,496Expenses 2021: $9,091,521Net Income 2021: $875,9752021Revenue 2022: $6,746,002Expenses 2022: $6,756,731Net Income 2022: -$10,7292022Revenue 2023: $6,359,880Expenses 2023: $6,564,085Net Income 2023: -$204,2052023Revenue 2024: $5,041,772Expenses 2024: $4,916,902Net Income 2024: $124,8702024

Highlighted filing

2022

Revenue$6,746,002
Expenses$6,756,731
Net Income-$10,729
Open 2022 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2022 to Dec 31, 2022
Signed
Nov 13, 2023
Return Version
2022v5.0
Gross Receipts
$6,746,002
Mission and Program Overview

Mission

The huntington study group (hsg) is dedicated to the mission: to seek treatments that make a difference to those affected by huntington disease. Description continued on schedule o.specifically, the hsg focuses on the conception, conduct, analyses, scientific reporting, and communication of clinical research, including treatment and observational trials, aimed at relieving the burdens and slowing the progression of hd. The hsg 1) identifies and prioritizes initiatives that can have an impact on patient care; 2) advances knowledge about the cause, disease progression and treatment of hd and related disorders; and 3) collaborates with government, foundations, industry, and the hd community to effectively plan, execute and disseminate research and new knowledge related to hd.

See schedule o for organization's mission and most significant activities.the organization aims to advance knowledge about the cause(s), disease progression and treatment of huntington disease and related disorders.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$4,788,808$4,042,871▼ $745,937
Accounts Receivable$2,972,472$1,771,278▼ $1,201,194
Cash and Non-Interest-Bearing Accounts$1,181,814$959,199▼ $222,615
Prepaid Expenses and Deferred Charges$142,752$79,679▼ $63,073
Land, Buildings, and Equipment, Net$25,318$33,257▲ $7,939
Total Assets$10,251,900$8,704,616▼ $1,547,284
Other Assets Total$1,140,736$1,818,332▲ $677,596
Liabilities
Deferred Revenue$1,434,029$1,434,643▲ $614
Accounts Payable and Accrued Expenses$2,302,094$1,349,107▼ $952,987
Total Liabilities$3,736,123$2,783,750▼ $952,373
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$6,515,777$5,920,866▼ $594,911
Total Net Assets Fund Balance$6,515,777$5,920,866▼ $594,911
Total Liabilities and Net Assets / Fund Balance$10,251,900$8,704,616▼ $1,547,284

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$33,257$40,245$73,502
Other Assets Org$1,818,332--
Compensation and Service Providers
Top Officer Pay85th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Shari Kinel JdCEO/secretaryFT$235,111$21,436$256,547
Elise KaysonVP of Clinical OperationsFT$200,056$16,115$216,171
Anne Van DusenCOOFT$157,245$20,978$178,223
Jeffrey MannDirector of Quality AssuranceFT$137,784$29,594$167,378
Elizabeth a De BlieckDirector of Project ManagementFT$139,533$19,788$159,321
Michael LentineCFOFT$144,707$13,518$158,225
Jody GoldsteinDirector of Clinical OperationsFT$140,507$13,600$154,107
Joni SteinmanTreasurer-$16,000-$16,000

Board Members and Trustees

NameTitle
Peter Schmidt PhdChair
William HohVice Chair
Arvind SreedharanBoard Member

Highest Paid Contractors

ContractorServicesLocationCompensation
University Of Rochester ChetcctcClinical Trial Services265 CRITTENDEN BLVD, Rochester, NY 14642$1,235,546
University Of Texas Health Science CtrClinical Trial ServicesPO BOX 301418, Dallas, TX 75303$310,732
Hereditary Neurological Disease CentreClinical Trial Services9300 EAST 29TH ST NORTH SUITE 350, Wichita, KS 67226$233,921
Grand Hyatt Tampa BayConference Services2900 BAYPORT DR, Tampa, FL 33607$230,393
Vanderbilt UniversityClinical Trial ServicesBOX 891236 1501 NORTH PLANO RD SU, Richardson, TX 75081$220,116
Revenue and Support

Revenue Composition

Contributions and Grants
$406,855
Program Service Revenue
$6,190,676
Investment Income
$111,436
Other Revenue
$37,035
All Other Contributions
$406,855
Change in Net Assets
$-10,729

Audited Revenue Reconciliation

Revenue per Audited Statements
$6,746,002
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-824,563
Total Revenue per Audited Statements
$5,921,439
Total Revenue per Form 990
$6,746,002
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$5,191,679
Salaries, Compensation, and Employee Benefits$1,565,052
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages-$898,882-$898,882
Current Officers, Directors, Trustees, and Key Employees-$430,772-$430,772
Fees for Services Other$359,162$70,462-$429,624
Information Technology-$254,949-$254,949
Payroll Taxes-$172,611-$172,611
Insurance-$122,992-$122,992
Other Employee Benefits-$62,787-$62,787
Conferences and Meetings-$46,233-$46,233
Advertising$32,035--$32,035
Occupancy-$29,400-$29,400
Office Expenses-$27,746-$27,746
Fees for Services Legal-$20,017-$20,017
Other Expenses$365,644$17,232-$17,232
Fees for Services Accounting$12,538$2,212-$14,750
Depreciation Depletion-$8,651-$8,651
All Other Expenses$1,498$-225,665-$-224,167
Total Functional Expenses$4,781,568$1,975,163$0$6,756,731

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$6,756,731
Total Expenses per Audited Statements$6,756,731
Total Expenses per Form 990$6,756,731
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
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
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
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

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

“The form 990 is reviewed internally by the executive director and director of finance and then shared with the board before filing.”

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

“Each director, officer, committee member or employee shall sign annually a statement that confirms that they have received the conflict of interest policy, understands the policy, has agreed to comply with the policy and understands that the organization is a tax exempt entity and that in order to maintain its exemption it must engage primarily in activities that accomplish one or more of its tax exempt purposes. Periodic reviews are conducted to ensure compliance with this policy.”

Form 990, Part VI, Section B, Line 15

“The amount of compensation was based on a decision to offer a stipend to board members for the significant amount of time and commitment spent by the board members on an annual basis. The executive director has determined that the stipends are deemed to be reasonable in relation to the amount of time spent by the board of directors.”

Form 990, Part VI, Section C, Line 19

“All documents are available upon request”

Filing and Contact Details

Filer

Filer Name
Huntington Study Group Ltd
EIN
45-5557987
Phone
8004877671
Address
95 ALLENS CREEK BLDG 1 132, ROCHESTER, NY 14618

Signing Officer

Name
Shari Kinel
Title
CEO
Phone
8004877671
Signed
2023-11-13
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Shari Kinel
Formed
2012
Legal Domicile
Ny
Voting Board Members
5
Independent Board Members
4
Employees
25
Volunteers
28

Preparer

Firm
Efpr Group Cpas Pllc
Address
100 SOUTH CLINTON AVE SUITE 1500, ROCHESTER, NY 14604
Preparer
Christopher Johnston
Phone
5854278900
Supplemental Narrative

Additional Explanations

FORM 990, PART XII, LINE 2C:

“No change from the prior year.”

Financial Statement Notes

PART X, LINE 2:

“The organization is exempt from federal income tax under section 501(c)(3) of the internal revenue code. However, income from certain activities not directly related to the organization's tax-exempt purpose is subject to taxation as unrelated business income. In accordance with asc 740-10-50, the organization recognizes tax benefits from uncertain tax positions only if it is more likely than not that the tax position will be sustained on examination by the taxing authorities. Management believes that the organization is currently operating in compliance with the applicable requirements of the internal revenue code. Therefore, no liability for unrecognized tax benefits has been included on the organization's financial statements. The exempt organization's informational returns are subject to audit by various taxing authorities.”

Raw XML AppendixShowing 400 of 680 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 HSG IS A NETWORK OF CLINICIANS, RESEARCH INVESTIGATORS, SCIENTISTS AND HUNTINGTON DISEASE (HD) EXPERTS, LARGELY FROM ACADEMIC/RESEARCH INSTITUTIONS WORLDWIDE WORKING TOGETHER WITH A VARIETY OF SPONSORS (GOVERNMENT, INDUSTRY, FOUNDATION) TO DEVELOP TREATMENTS THAT MAKE A DIFFERENCE FOR HD PATIENTS AND FAMILIES. WE PARTNER WITH HD CARE AND ADVOCACY GROUPS IN ORDER TO FULFILL OUR MISSION MOST EFFECTIVELY.DESCRIPTION CONTINUED ON SCHEDULE O.THE HSG HAS CARRIED OUT COOPERATIVE THERAPEUTIC RESEARCH SINCE 1993, BEGINNING WITH THE DEVELOPMENT OF THE UNIFIED HUNTINGTON'S DISEASE RATING SCALE (UHDRS) AND LONGITUDINAL DATABASE. THE HSG, THROUGH CLINICAL TRIALS, HAS BROUGHT THE ONLY TWO FDA-APPROVED HD TREATMENTS (TETRABENAZINE AND DUTETRABENAZINE) TO MARKET. WE CONTINUE TO SERVE OUR CONSTITUENTS THROUGH CLINICAL RESEARCH STUDIES. THE HSG HAS PARTNERED WITH PHARMACEUTICAL COMPANIES, PRIVATE FOUNDATIONS, THE NATIONAL INSTITUTES OF HEALTH (NIH), AND THE FDA ORPHAN DRUG PRODUCTS DIVISIONS IN DEVELOPING AND CONDUCTING TRIALS AND OBSERVATIONAL STUDIES.THE HSG IS COMMITTED TO 1) ADVANCE KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; 2) DEVELOPMENT, ACCESS TO, AND MAINTENANCE OF STUDY DATABASES; 3) FULL DISCLOSURE OF RESEARCH RESULTS IN SCIENTIFIC JOURNALS AFTER INDEPENDENT EXPERT REVIEW; 4) PROTECTION AGAINST CONFLICT OF INTEREST; 5) UNIFORM CONTRACTING AND SUB-CONTRACTING ACROSS ALL RESEARCH SITES; AND 6) DEMOCRATIC GOVERNANCE OF ITS ORGANIZATIONS AND ACTIVITIES.
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IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
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Filings

Displayed year

2022 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$8,704,616
Liabilities
$2,783,750
Net assets
$5,920,866
Revenue
$6,746,002
Expenses
$6,756,731
Net income
-$10,729
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$8.06$1.23$6.83$5.04$4.92$0.12
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$8.17$1.90$6.27$6.36$6.56$0.20
2022Detailed filing. Detailed filing data is available for this year.$8.70$2.78$5.92$6.75$6.76$0.01
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$10.3$3.74$6.52$9.97$9.09$0.88
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$7.66$2.46$5.20$11.2$10.2$0.99
2019Facts available. Structured filing facts are available, but richer extracted sections are limited.$7.72$3.86$3.86$13.1$12.8$0.32
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.83$2.56$3.27$9.75$9.55$0.21
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.44$2.21$3.23$8.18$8.18$0.01
2016Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.49$2.42$3.07$9.46$9.09$0.37
2015Detailed filing. Detailed filing data is available for this year.$4.19$1.57$2.62$7.56$6.38$1.19
2014XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.42$0.95$1.47$6.99$6.49$0.50
2013XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.39$0.41$0.98$3.74$2.74$0.99
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.12$0.14$0.02$0.06$0.07$0.02