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Top Rated

Huntington's Disease Society of America

CharityWatch rating issued
July 2025

Top-Rated Charity
A-
CharityWatch Rating
Our independent rating based
on a number of factors.
 
78%
Program Percentage
Amount spent on programs
relative to overhead.
 
$18
Cost to Raise $100
Amount spent to raise
$100 of contributions.

Contact Information

Huntington's Disease Society of America
505 Eighth Avenue
Suite 902
New York, NY 10018

Other Names

None

Tax Status

501(c)3

Website

www.hdsa.org

Stated Mission

A health and welfare organization dedicated to improving the lives of people with Huntington's Disease and their families.

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Data based on Fiscal Year Ended 12/31/2023

Program Percentage: 78%

The percentage of Huntington's Disease Society of America's cash budget it spends on programs relative to overhead (fundraising, management, and general expenses).

$12,000,000

Calculated Total Expenses

(rounded)

 

Cost to Raise $100: $18

How many dollars Huntington's Disease Society of America spends on fundraising to raise each $100 of contributions.

$10,000,000

Calculated Total Contributions

(rounded)

Government Funding

0% to 24%

Percentage of cash revenue
coming from government sources

 

Financial Documents

Entity Document Type Tax ID
Huntington's Disease Society of America Audited Financial Statements Multiple
Huntington's Disease Society of America IRS Form 990 13-3349872
Huntington's Disease Society of America Group IRS Form 990 90-0658125
Entity: Huntington's Disease Society of America
Document Type: Audited Financial Statements
Tax ID: Multiple
Entity: Huntington's Disease Society of America
Document Type: IRS Form 990
Tax ID: 13-3349872
Entity: Huntington's Disease Society of America Group
Document Type: IRS Form 990
Tax ID: 90-0658125

Governance & Transparency

CharityWatch evaluates certain criteria related to a charity's Governance and Transparency. Donors may want to consider a charity's willingness to be open and transparent with CharityWatch to be a good litmus test for determining its commitment to public accountability.
This charity is Top-Rated
What does it mean to be Top-Rated?
 
Huntington's Disease Society of America
meets governance benchmarks.
 
Huntington's Disease Society of America
meets transparency benchmarks.
Transparency
Provides Financial Information
Audit Accessibility
Governance: Policies
Reports regularly & consistently monitoring & enforcing compliance with a written Conflict of Interest Policy
Reports required, annual disclosure by officers, directors, and key staff of interests that could give rise to conflicts
Reports having a written Whistleblower Policy
Reports having a written Document Retention and Destruction Policy
Governance: Financials
Reports providing copy of tax form to all board members prior to filing it with IRS
Reports that financial statements were audited by an independent accountant
Governance: Board of Directors
Reports at least 5 voting board members
51% or more of voting board members reported as independent
Reports documenting minutes of board and board committee meetings
Privacy Policy
Privacy Policy No Sharing  

  Name Title Compensation
1 Louise Vetter Chief Executive Officer $423,374
2 Rosemary Coluccio Chief Operations Officer $289,923
3 Debra Lovecky Director of Education Programs $275,177
1
Name: Louise Vetter
Title: Chief Executive Officer
Compensation: $423,374
2
Name: Rosemary Coluccio
Title: Chief Operations Officer
Compensation: $289,923
3
Name: Debra Lovecky
Title: Director of Education Programs
Compensation: $275,177

CharityWatch Analysts perform an in-depth analysis of charities' audited financial statements and IRS tax filings, and often review other documents such as state filings, annual reports, and fundraising contracts during their evaluations. Below are select notes that CharityWatch believes may be of interest to donors.

CharityWatch's rating of Huntington's Disease Society of America includes the financial activities of the Society's headquarters, based in New York City, and its 35 chapters located throughout the United States, which are included in the Society's audited financial statements for the year ended December 31, 2023.

According to the Huntington's Disease Society of America audit of December 31, 2023 (Note I, In-Kind Contributions), the Society received nonfinancial assets during 2023 on which it placed a total value of $183,645.

[Note: CharityWatch generally excludes the value of in-kind (non-cash) donations of goods and services from its calculations of Program % and Cost to Raise $100. More information on how grades are calculated and the treatment of in-kind donations can be found on the Our Process page.]

According to the Huntington Disease Society of America (the Society) tax filing for the fiscal year ended December 31, 2023, the Society reports re: Compensation, Supplemental Information (IRS Form 990, Schedule J, Part III):

Regarding severance payments to officers, directors, trustees, key employees and highest compensated employees (Schedule J, Part I, Line 4a):

"During 2023, the Society made a severance payment to the former Director of Program Education."

[Debra Lovecky, former Director of Program Education, received $129,060 of other reportable compensation with total reported compensation of $275,177 during 2023 (IRS Form 990, Schedule J, Part II)].

Regarding non-fixed payments to officers, directors, trustees, key employees and highest compensated employees (Schedule J, Part I, Line 7):

"During 2023, the Board of Trustees approved a nonfixed payment for the Chief Executive Officer."

[Louise Vetter, Chief Executive Officer, received $49,737 of bonus and incentive compensation with total reported compensation of $423,374 during 2023 (IRS Form 990, Schedule J, Part II)].



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