BBB Wise Giving Report for
Batten Disease Support and Research Association

BBB Wise Giving Report issued July 2010
BBB Wise Giving Report expires July 2012


Does not meet one or more standards
This charity does not meet one or more of the 20 standards for Charity Accountability. Find out more...


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Charity Contact Information

Name: Batten Disease Support and Research Association
Address: 166 Humphries Drive
  Reynoldsburg, OH 43068
Phone: 800-448-4570
740-927-4298
Web Address: www.bdsra.org
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BBB Wise Giving Alliance Comments

Year, State Incorporated: 1987, Ohio
Affiliates: 13 chapters

Stated Purpose: "to be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disease known as Batten Disease."

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Evaluation Conclusions

               

Batten Disease Support and Research 2 Standards for Charity Accountability.

Standard 14: Budget - Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.

BDSRA does not meet this Standard because, when the organization provided budget information, it indicated that the budget:

  • Did not include a breakdown of expenses by each major program service activity (i.e. research, conference, education, etc.).

Standard 16: Annual Report - Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.

BDSRA does not meet this standard because the most recent annual report did not include:

  • Total income.
  • Total expenses for each program in the same categories that appear in the organization’s financial statements.
  • Total fund raising expenses.
  • Total administrative expenses.
  • Total end of year net assets.
BDSRA meets the remaining 18 Standards for Charity Accountability.
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Programs

               

BDSRA provides information, education, medical referrals and support through a variety of programs. Through its sibling, patient/mentors, and general bereavement programs, the organization strives to alleviate the stress and hardship on families that have loved ones who are victims of batten disease. BDSRA also promotes, assists, and funds research to find a viable treatment for Batten disease.

For the fiscal year ended April 30, 2009, BDSRA's program expenses were:

  
Member services 148,058
Research 135,970
Conference 47,351
Education 17,659
Bereavement 6,906
Sibling 3,711
Parent mentor 3,004
Total Program Expenses: $362,659
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Governance

               

Chief Executive : Lance W. Johnston, Executive Director
Compensation*:
 $62,000

Chair of the Board: Jane Emanuel, MD
Chair's Profession / Business Affiliation: Physician

Board Size: 13

Paid Staff Size: 4

*May 1, 2008 - April 1, 2009 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
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Fund Raising

               

Method(s) Used:

Direct mail, special events, grant proposals, Internet appeals, planned giving, and membership appeals.
Fund raising costs were 1% of related contributions. (Related contributions, which totaled $635,584, 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 BDSRA's audited financial statements for the fiscal year ended April 30, 2009.

Source of Funds  
Fundraising 446,184
Donations 174,680
Grants 10,000
Interest/dividend income 5,325
Dues 4,720
Other 1,536
Unrealized loss on investments -66,005
Total Income $576,440


chart



Uses of Funds as a % of Total Expenses

Programs: 88%  Fund Raising: 2%  Administrative: 10% 

Total income   $576,440
  Program expenses $362,659
  Fund raising expenses 6,728
  Administrative expenses 42,419
 
Total expenses   $411,806
Income in Excess of Expenses   164,634
Beginning net assets   496,993
Ending net assets   661,627
Total liabilities   17,142
Total assets   $678,769


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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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