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CHARITY REVIEW
Issued: February 2025 Expires: February 2027

Cure Rare Disease

Accredited Charity
Accredited Charity

Meets Standards
(380) 225-1879
4 Research Drive
Woodbridge, CT, 06525
https://cureraredisease.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 Rare Disease meets the 20 Standards for Charity Accountability.

Stated Purpose:
"to enable and finance the development of life-saving genetic medicines for rare and ultra-rare patient populations previously deemed too rare to treat."

Year, State Incorporated:
2017, MA

Also Known As:
Terry's Foundation for Muscular Dystrophy

Cure Rare Disease (CRD) states it is developing therapeutics for rare and ultra-rare genetic neuromuscular conditions, in addition to building a novel drug development framework. The organization reports it facilitates collaboration between researchers and clinicians, policy experts, and donors. In 2024, CRD reported that the organization completed renovations on its Class A laboratory facility, where it will expand its research and development efforts and partner with other researchers to develop therapeutic treatments for rare neuromuscular diseases.

For the year ended July 31, 2024, Cure Rare Disease's program expenses were:

Program services $2,270,014
Total Program Expenses $2,270,014

Chief Executive
Richard Horgan, Founder, President and Chief Executive Officer

Compensation*
$174,441

Chair of the Board
Mark Smith

Chair's Profession / Business Affiliation
Chief Financial Officer and Corporate Secretary, Guidon Energy

Board Size
9

Paid Staff Size
3

*2023 compensation 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, Print advertisements

Fundraising costs were 5% of related contributions. (Related contributions, which totaled $4,549,024, 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 Rare Disease's audited financial statements for the year ended July 31, 2024.

Source of Funds
Other income $99
Investment income $46,016
Licensing revenue $60,500
Rental income $461,311
Special events, net $712,576
Contributions and grants $3,836,447
Total Income $5,116,950

Programs: 85% Fundraising: 9% Administrative: 7%

Total Income $5,116,950
Total expenses: $2,682,739
  Program expenses $2,270,014
  Fundraising expenses $237,814
  Administrative expenses $174,911
  Other expenses $0
Income in Excess of Expenses $2,434,211
Beginning Net Assets $1,021,761
Other Changes In Net Assets $0
Ending Net Assets $3,455,972
Total Liabilities $2,512,688
Total Assets $5,968,660

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