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CHARITY REVIEW
Issued: November 2025 Expires: November 2027

Cure SMA

Accredited Charity
Accredited Charity

Meets Standards
(800) 886-1762
50 East Commerce Drive, Suite 90
Schaumburg, IL, 60173
https://www.curesma.org
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Cure SMA meets the 20 Standards for Charity Accountability.

Stated Purpose:
"to lead the way to a world where everyone impacted by spinal muscular atrophy (SMA) is empowered to lead independent, successful, and fulfilling lives."

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, 2024, Cure SMA's program expenses were:

Community support $6,461,052
Research $2,976,714
Patient services $2,342,300
Awareness $713,191
Total Program Expenses $12,493,257

Chief Executive
Kenneth Hobby, President

Compensation*
$358,071

Chair of the Board
Nick Farrell

Chair's Profession / Business Affiliation
Senior Vice President, General Counsel, and Secretary, Hillenbrand

Board Size
25

Paid Staff Size
43

*2023 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Telephone appeals, Invitations to fund raising events, Print advertisements (newspapers, magazines, etc.), Grant proposals, Internet, Planned giving arrangements, Cause-related marketing (affinity credit cards, consumer product sales, etc.), Workplace Giving

Fundraising costs were 24% of related contributions. (Related contributions, which totaled $7,741,882, 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, 2024.

Source of Funds
Contributions and grants $4,825,392
Annual conference $4,694,448
Special events revenue, net $2,802,600
Industry sponsored research $1,581,564
Summit of Strength symposiums $682,501
Investment income, net $222,196
In-kind contributions $113,890
Employee retention credit interest $60,454
Other income $55,168
Grant forfeitures $10,547
Total Income $15,048,760

Programs: 79% Fundraising: 12% Administrative: 9%

Total Income $15,048,760
Total expenses: $15,720,162
  Program expenses $12,493,257
  Fundraising expenses $1,874,461
  Administrative expenses $1,352,444
  Other expenses $0
Income in Excess of Expenses $-671,402
Beginning Net Assets $6,792,731
Other Changes In Net Assets $0
Ending Net Assets $6,121,329
Total Liabilities $4,582,639
Total Assets $10,703,968

Note: For the year ended June 30, 2024, Cure SMA reported in-kind income of $113,890 including rent-free signage, furniture, and accessories ($91,190) and professional accounting services ($22,700).

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.

RELATED CONTENT

Report completed by:
BBB Wise Giving Alliance