Huntington Study Group Ltd

Nonprofit profile at a glance

EIN
455557987
IRS 990 coverage
2013–2024
Forms available
Form 990 2024, Form 990-EZ 2012
Location
Rochester, NY, USA
Phone
8004877671
Rating
64
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Birth Defects and Genetic Diseases

Official website

Reported finances

Revenue
$5,041,772
Expenses
$4,916,902
Assets
$8,061,578
Liabilities
$1,232,734

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

12 people listed

Executive titles in this filing

  • SHARI KINEL JD (CEO/SECRETARY (UNTIL 7/3/24))
  • DANIEL CLAASSEN (CEO (BEGIN 9/1/24))

Highest reported compensation

  • SHARI KINEL JD (CEO/SECRETARY (UNTIL 7/3/24)): $282,263 total reported compensation
  • ANNE VAN DUSEN (COO): $279,617 total reported compensation
  • MICHAEL LENTINE (CFO): $235,745 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

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.

What it reported doing in 2024

The 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.

Operating model

Revenue model
Earned-program. 88% of the money available for current operations came from fees and other program revenue.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence.

Rating breakdown

  • Financial Efficiency: 51
  • Transparency & Controls: 71
  • Accountability: 85
  • Sustainability: 43
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 56.1%; rating input score 56
  • Program expense ratio: 60.1%; rating input score 60
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Yes; rating input score 100

Accountability

  • Independent voting board: 75%; rating input score 75; 13th percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 2.5%; rating input score 43; 43rd percentile among comparable filings
  • Total-asset coverage ratio: 1.64; rating input score 55; 55th percentile among comparable filings
  • Liabilities to assets ratio: 0.15; rating input score 50; 50th percentile among comparable filings
  • Officer compensation ratio: 31.5%; rating input score 5; 5th percentile among comparable filings

Growth

  • Program expense growth: -1% per year; rating input score 0; 11th percentile among comparable filings
  • Revenue growth: 3.9% per year; rating input score 100; 34th percentile among comparable filings
  • Asset growth: 12.5% per year; rating input score 100; 67th percentile among comparable filings

Details

  • Where the money goes: 56.1% of revenue deployed · 60.1% of spending went to programs
  • Governance: 3 of 4 board members independent · 9 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $3M in reported program spending
  • Leadership: top reported pay $282K · 12 people listed · 0 of 6 pay-setting controls reported
  • Highest-paid contractors: 5 contractors listed · $1.4M reported
  • Consistency: 31 of 31 current checks pass
  • Schedules: 6 filed schedules · includes major donors, executive pay, and related organizations
  • Filing history: 11 filing years from 2013 to 2024
  • Contacts: How to reach this organization
  • Money network: 8 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Review — Financial Efficiency: Mission deployment rate scored 56/100.
  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • High — Growth: Program expense growth scored 0/100.
  • Moderate — Sustainability: Operating margin scored 43/100.
  • Review — Sustainability: Total-asset coverage ratio scored 55/100.
  • High — Sustainability: Officer compensation ratio scored 5/100.
  • Review — Sustainability: Liabilities to assets ratio scored 50/100.