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Health : Diseases, Disorders, and Disciplines

Huntington's Disease Society of America

Help for today. Hope for tomorrow.

three stars

89.93

505 Eighth Avenue Suite 902
New York, NY 10018
tel: (212) 242-1968   Web Site
EIN: 13-3349872

Board Leadership
EJ Garner
Chair

CEO
Louise Vetter
Chief Executive Officer

 
 
  Score
(out of 100) 		Rating
Overall Score & Rating 89.93 three stars
  Financial 85.77 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 12/23/2020 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?

The Huntington's Disease Society of America (HDSA) is a national, voluntary health organization dedicated to improving the lives of people with Huntington's Disease and their families. Founded in 1967, HDSA promotes and supports research and medical efforts to eradicate Huntington's Disease; assists people and families affected by Huntington's Disease to cope with the problems presented by the disease; and educates the public and health professionals about Huntington's Disease. Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason.

The Huntington's Disease Society of America (HDSA) is a national, voluntary health organization dedicated to improving the lives of people with Huntington's Disease and their families. Founded in 1967, HDSA promotes and supports research and medical efforts to eradicate Huntington's Disease; assists people and families affected by Huntington's Disease to cope with the problems presented by the disease; and educates the public and health professionals about Huntington's Disease. Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason.

Learn more about how we calculate the overall score and rating.

Financial

three stars

85.77

Accountability & Transparency

four stars

100.00

This rating was published 12/23/2020 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)		 77.0%
  Administrative Expenses 9.5%
  Fundraising Expenses 13.4%
  Fundraising Efficiency $0.11
  Working Capital Ratio (years) 1.02
  Program Expenses Growth 4.6%
  Liabilities to Assets 14.7%
All data for Financial Performance Metrics calculations was provided by Huntington's Disease Society of America on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Huntington's Disease Society of America on recent 990s filed with the IRS.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Highly Rated

Charity Name & State Overall Score Overall Rating
Huntington's Disease Society of America (NY) 89.93 three stars
Epilepsy Foundation (MD) 91.32 four stars
Cystic Fibrosis Research Institute (CA) 93.24 four stars
Bryan's House (TX) 88.63 three stars
Creutzfeldt-Jakob Disease Foundation (OH) 93.66 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $6,329,931
   Federated Campaigns $202,842
   Membership Dues $0
   Fundraising Events $1,736,820
   Related Organizations $2,619,075
   Government Grants $0
Total Contributions $10,888,668
   Program Service Revenue $0
Total Primary Revenue $10,888,668
   Other Revenue $128,715
TOTAL REVENUE $11,017,383
   
EXPENSES  
   Program Expenses $7,142,452
   Administrative Expenses $560,427
   Fundraising Expenses $1,490,291
TOTAL FUNCTIONAL EXPENSES $9,193,170
   
Payments to Affiliates $0
Excess (or Deficit) for the year $1,824,213
   
Net Assets $9,352,219

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Patient & Family Services $2,604,825 36.5%
Research $1,753,479 24.6%
Community Outreach $1,089,434 15.3%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 12/23/2020 89.93 three stars
2018-12 12/20/2019 90.00 four stars
2017-12 12/21/2018 92.78 four stars
2016-12 03/01/2018 91.04 four stars
2015-12 12/01/2016 91.37 four stars
2014-12 08/01/2016 87.14 three stars
2014-12 06/01/2016 85.95 three stars
 
CN 2.0
2014-12 12/01/2015 91.07 four stars
2013-12 05/01/2015 86.21 three stars
2012-12 11/01/2013 74.97 two stars
2011-09 10/01/2012 75.78 two stars
2010-09 04/01/2012 79.17 two stars
2010-09 03/01/2012 77.38 two stars
2010-09 02/01/2012 77.36 two stars
2009-09 09/20/2011 85.26 three stars
 
CN 1.0
2009-09 06/01/2011 74.37 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 13-3349872
Name in IRS Master File HUNTINGTONS DISEASE SOCIETY OF AMERICA INC
NTEE Code [Not Provided by IRS]
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (179) Other health services
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Central - the organization is a parent (group ruling) and is not a church or 501(c)(1) organization.
Group Name HUNTINGTONS DISEASE SOCIETY OF AMERICA INC
Ruling Date February, 1988
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)		 (Log In or Register Now to View Forms 990!)
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$326,226 3.54% Louise Vetter Chief Executive Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
Huntington's Disease Society of America (NY) 89.93 three stars
GBS|CIDP Foundation International (PA) 100.00 four stars
California Dental Association Foundation (CA) 88.22 three stars
MDS Foundation (NJ) 91.45 four stars
Jeffrey Modell Foundation (NY) 95.31 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Huntington's Disease Society of America
505 Eighth Avenue
Suite 902
New York, NY 10018
tel: (212) 242-1968
fax: (212) 239-3430
EIN: 13-3349872

Visit Web Site

Board Leadership

EJ Garner
Chair

CEO

Louise Vetter
Chief Executive Officer

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