Better Business Bureau Report for
Families of Spinal Muscular Atrophy

Better Business Bureau Report issued October 2012
Better Business Bureau Report expires October 2014

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: Families of Spinal Muscular Atrophy
Address: 925 Busse Road
  Elk Grove Village, IL 60007
Phone: 800-886-1762
Web Address:
Also known as:Families of SMA
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Better Business Bureau Comments

Year, State Incorporated: 1984, Illinois
Affiliates: None
Stated Purpose: FSMA's mission is to create a treatment and cure of Spinal Muscular Atrophy by funding research programs, supporting families, improving patient care and educating health care professionals.

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Evaluation Conclusions


Cure SMA does not meet the following 2 Standards for Charity Accountability.

Standard 6: Board Policy on Effectiveness - Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

Families of Spinal Muscular Atrophy does not meet this Standard because:

  • The board of directors does not have a written policy stating that, at least every two years, an appraisal be done assessing the organization’s performance and effectiveness and determining future actions required to achieve its mission.

Standard 7: Board Approval of Written Report on Effectiveness - Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.

Families of Spinal Muscular Atrophy does not meet this Standard because:

  • The organization’s effectiveness assessment did not take place within the past two years. The last assessment was completed February 1, 2009.
  • It did not produce a written report outlining the results of its most recent effectiveness assessment.
Cure SMA meets the remaining 18 Standards for Charity Accountability.
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FSMA was founded for the purpose of accelerating SMA research and providing support to families affected by this devastating disease. SMA is the leading genetic cause of death in children under the age of 2. There is presently no cure or treatment. FSMA has funded more than $50 Million in research that included the identification of the SMA gene and its backup gene as well as the protein produced by the gene. FSMA has also funded several drug discovery programs to develop drugs ready for clinical trials. FSMA also funds several multi-center clinical drug safety studies and provides support to 39 researchers at 22 institutions. FSMA provides support to patients and families through an equipment sharing pool, provision of disease specific information and a comprehensive web-site ( The organization publishes a newsletter that provides in-depth information on current SMA research , clinical studies and special events as well as valuable advice on living with SMA. FSMA sponsor an annual conference where families interact with researchers, clinicians and families coping with SMA.

For the fiscal year ended June 30, 2012, Cure SMA's program expenses were:

Research 1,507,602
Patient 1,053,930
Total Program Expenses: $2,561,532
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Chief Executive : Kenneth Hobby, President

Chair of the Board: Paula Barrett
Chair's Profession / Business Affiliation: Human Resource Consultant

Board Size: 15

Paid Staff Size: 15

*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, invitations to fund raising events, print advertisements, television, radio, grant proposals, internet, planned giving arrangements, cause-related marketing, membership
Fund raising costs were 24% of related contributions. (Related contributions, which totaled $4,619,556, 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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The following information is based on Families of Spinal Muscular Atrophy's audited financial statements for the fiscal year ended June 30, 2012.

Source of Funds  
Contributions 4,619,556
Other Income 8,556
Interest Income 2,149
Total Income $4,630,261


Uses of Funds as a % of Total Expenses

Programs: 66%  Fund Raising: 29%  Administrative: 5% 

Total income $4,630,261
Program expenses $2,561,532
Fund raising expenses 1,099,079
Administrative expenses 184,660
Total expenses $3,845,271
Income in Excess of Expenses 784,990
Beginning net assets 835,674
Ending net assets 1,620,664
Total liabilities 973,670
Total assets $2,594,334

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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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