Better Business Bureau Report for
Cure SMA

Better Business Bureau Report issued April 2015
Better Business Bureau Report expires April 2017

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

Year, State Incorporated: 1984, Illinois
Affiliates: None
Stated Purpose: Cure SMA leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide families the support they need for today.

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Evaluation Conclusions


Cure SMA does not meet the following Standard for Charity Accountability.

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.

Cure SMA does not meet this standard because:

  • The organization states it does not have an annual report covering activities conducted in the past year.
Cure SMA meets the remaining 19 Standards for Charity Accountability.
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Cure SMA provides invaluable support & services to individuals and familes such as equipment, medical information, resources and support. Cure SMA has funded nearly two thirds of all ongoing SMA drug programs. Cure SMA annually hosts the largest SMA Conference in the world for familes, members of the scientific community from 23 countries around the world participate.

For the fiscal year ended June 30, 2014, Cure SMA's program expenses were:

Research (Note 5) 1,661,011
Family support 772,793
Patient services 554,921
Awareness 235,204
Total Program Expenses: $3,223,929
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Chief Executive : Kenneth Hobby, President

Chair of the Board: Richard Rubenstien
Chair's Profession / Business Affiliation: Registered Representative & Financial Advisor for Park Ave Securities

Board Size: 14

Paid Staff Size: 18

*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, grant proposals, internet, planned giving arrangements
Fund raising costs were 32% of related contributions. (Related contributions, which totaled $4,832,840, 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 Cure SMA's audited financial statements for the fiscal year ended June 30, 2014.

Source of Funds  
Contributions and event related revenue (Note 2) 4,832,840
Other income 345,239
Interest income (Note 2) 3,330
Total Income $5,181,409


Uses of Funds as a % of Total Expenses

Programs: 64%  Fund Raising: 31%  Administrative: 5% 

Total income $5,181,409
Program expenses $3,223,929
Fund raising expenses 1,528,327
Administrative expenses 249,794
Total expenses $5,002,050
Income in Excess of Expenses 179,359
Beginning net assets 2,045,096
Ending net assets 2,224,455
Total liabilities 1,155,939
Total assets $3,380,394

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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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