Cure SMA
Meets Standards
Standards For Charity Accountability
Governance
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Board Oversight
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Board Size
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Board Meetings
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Board Compensation
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Conflict of Interest
Measuring Effectiveness
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Effectiveness Policy
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Effectiveness Report
Finances
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Program Expenses
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Fundraising Expenses
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Accumulating Funds
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Audit Report
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Detailed Expense Breakdown
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Accurate Expense Reporting
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Budget Plan
Fundraising & Info
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Truthful Materials
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Annual Report
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Website Disclosures
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Donor Privacy
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Cause Marketing Disclosures
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Complaints
Cure SMA meets the 20 Standards for Charity Accountability.
Stated Purpose:
"to lead the way to a world without spinal muscular atrophy (SMA)."
Year, State Incorporated:
1984, IL
Cure SMA aims to ensure that families have information about SMA and that they understand all the options and resources available to them. The organization sends out care series booklets, which are part of informational packets available at no cost. The booklets are developed by medical experts and reviewed by families, covering topics such as breathing, nutrition, palliative care, and genetics. Cure SMA focuses on three different research areas: basic research to understand the cause and biology of SMA; drug discovery to convert basic research ideas into practical new drug candidates; and clinical and regulatory research to provide the infrastructure to test the drug candidates. The organization hosts an annual conference which brings together researchers, clinicians, and families to network, learn, and collaborate.
For the year ended June 30, 2021, Cure SMA's program expenses were:
| Research | $3,333,479 |
| Patient services | $2,050,709 |
| Family support | $1,863,070 |
| Awareness | $525,452 |
| Total Program Expenses | $7,772,710 |
Chief Executive
Kenneth Hobby, President
Compensation*
$344,658
Chair of the Board
Nick Farrell
Chair's Profession / Business Affiliation
Senior Vice President, General Counsel, Secretary, and Chief Compliance Officer
Board Size
18
Paid Staff Size
48
*2021 compensation, ass reported by the organization, includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio, Telemarketing, Print advertisements
Fundraising costs were 21% of related contributions. (Related contributions, which totaled $8,740,565, are donations received as a result of fundraising activities.)
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.
The following information is based on Cure SMA's audited financial statements for the year ended June 30, 2021.
Source of Funds
| Other income | $33,326 |
| Grant forfeiture | $126,488 |
| Investment income | $265,393 |
| PPP loan and interest forgiveness | $775,125 |
| Program revenue | $1,627,325 |
| Special events, net | $2,425,902 |
| Contributions and grants | $5,539,538 |
| Total Income | $10,793,097 |
Programs: 76% Fundraising: 18% Administrative: 6%
| Total Income | $10,793,097 |
| Total expenses: | $10,251,735 |
| Program expenses | $7,772,710 |
| Fundraising expenses | $1,820,708 |
| Administrative expenses | $658,317 |
| Other expenses | $0 |
| Income in Excess of Expenses | $541,362 |
| Beginning Net Assets | $6,077,930 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $6,619,292 |
| Total Liabilities | $3,593,022 |
| Total Assets | $10,212,314 |
Note: For the year ended June 30, 2021, Cure SMA reported in-kind income of $239,547 including professional services ($185,000), equipment pool ($32,500), accounting services ($9,730), other ($7,669), and clothing and household goods ($4,647).
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 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 International Association of Better Business Bureaus.
This report is not to be used for fundraising or promotional purposes.
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Standards Not Met
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Review in Progress
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Report completed by:
BBB Wise Giving Alliance