BBB Wise Giving Report for
Huntington's Disease Society of America

BBB Wise Giving Report issued September 2011
BBB Wise Giving Report expires September 2013


This BBB Accredited charity meets all 20 Standards for Charity Accountability and is a Seal Holder. Find out more...


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Charity Contact Information

Name: Huntington's Disease Society of America
Address: 505 Eighth Avenue, Suite 902
  New York, NY 10018
Phone: 212-242-1968
800-345-4372
Web Address: www.hdsa.org
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BBB Wise Giving Alliance Comments

Year, State Incorporated: 1985, New York
Affiliates: 41 chapters
Stated Purpose: "to improve the lives of people with Huntington's Disease and their families."

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Evaluation Conclusions

               

Huntington's Disease Society of America (HDSA) meets the 20 Standards for Charity Accountability.
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Programs

               

HDSA funds research with the goal of finding improved treatments and, ultimately, a cure for Huntington’s Disease. HDSA has also established and supports Centers of Excellence at hospitals and university medical centers throughout the continental United States. These centers provide medical services for patients and their families and provide opportunities for patients to enroll in clinical trials for treatments that may slow the progression of the disease. The national headquarters provides technical support and assistance to its chapters in family and community outreach, fundraising, planning and budgeting.

For the fiscal year ended September 30, 2009, HDSA's program expenses were:

  
Family services 2,124,771
Research 2,017,682
Chapter development 1,650,770
Education 835,254
Total Program Expenses: $6,628,477
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Governance

               

Chief Executive : Louise A. Vetter, Chief Executive Officer
Compensation*:

Chair of the Board: Donald L. Barr
Chair's Profession / Business Affiliation: President, Donald L. Barr & Co.

Board Size: 16

Paid Staff Size: 32

*October 1, 2008 - September 30, 2009 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances. Barbara Boyle was the CEO of the organization during this period and received compensation of $270,426. The Alliance does not have salary information for the current CEO.
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Fund Raising

               

Method(s) Used:

Direct mail, special events, print advertisements, television, grant proposals, Internet appeals, planned giving, cause-related marketing, and membership appeals.
Fund raising costs were 13% of related contributions. (Related contributions, which totaled $8,822,796, are donations received as a result of fund raising activities.)
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Tax Status

               

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
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Financial

               

The following information is based on HDSA's audited financial statements (consolidated with affiliates) for the fiscal year ended September 30, 2009.

Source of Funds  
Foundation grants and corporate contributions 3,284,380
Public donations 2,730,231
Special events (net) 2,418,329
Federal campaigns 299,787
Donated services 90,069
Investment income 87,786
Sales of materials 49,772
Other 1,044
Total Income $8,961,398


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Uses of Funds as a % of Total Expenses

Programs: 76%  Fund Raising: 13%  Administrative: 11% 

Total income   $8,961,398
  Program expenses $6,628,477
  Fund raising expenses 1,141,438
  Administrative expenses 948,373
 
Total expenses   $8,718,288
Income in Excess of Expenses   243,110
Beginning net assets   1,526,431
Ending net assets   1,769,541
Total liabilities   3,556,030
Total assets   $5,325,571

Note: According to the organization's audited financial statements, HDSA received $90,069 of in-kind services during the fiscal year ended September 30, 2009 in the form of PSAs and electronic media campaigns.

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An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the BBB Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the Council of Better Business Bureaus, Inc.

This report is not to be used for fund raising or promotional purposes.

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