International Rett Syndrome Foundation does not meet the following 3 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.
IRSF 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.
IRSF does not meet this Standard because:
- The organization did not produce a written report outlining the results of its most recent effectiveness assessment.
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.
IRSF does not meet this Standard because:
- The organization states it does not have an annual report covering activities conducted in 2019.
The BBB Wise Giving Alliance requested but did not receive complete information from the organization and is unable to verify the organization's compliance with the following Standard(s) for Charity Accountability:
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13
14
15
International Rett Syndrome Foundation meets the remaining 13 Standards for Charity Accountability.
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Year, State Incorporated
1999, OH
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Also Known As
Rett Syndrome Research Foundation
Rettsyndrome.org
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Stated Purpose
"to accelerate full spectrum research to cure Rett Syndrome and empower families with information, knowledge and connectivity."
The International Rett Syndrome Foundation (IRSF) operates research programs that include activities focused on finding a treatment and cure for Rett Syndrome such as research grants, new studies/transitional research, medical symposiums, and support of natural history study clinics. The organization's family empowerment and education programs serve to focus on enhancing the overall lives of those afflicted with Rett Syndrome and their families such as an 800 phone number, regional representatives, and family advisory boards. Additionally, these programs provide information about and raising awareness of Rett Syndrome via the website, newsletters, and an annual family conference.
For the year ended December 31, 2019, International Rett Syndrome Foundation's program expenses were:
Research |
$1,861,284 |
Family empowerment and education |
$542,790 |
Total Program Expenses: |
$2,404,074 |
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Chief Executive
Melissa Kennedy, Chief Executive Officer
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Compensation*
$165,908
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Chair of the Board
Bill Babiarz
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Chair's Profession / Business Affiliation
Senior Derivatives Trader, IMC Financial Markets
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Board Size
11
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Paid Staff Size
10
*2019 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements, Television
Fundraising costs were 14% of related contributions. (Related contributions, which totaled $5,076,281, 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 International Rett Syndrome Foundation's audited financial statements for the year ended December 31, 2019.
Source of Funds |
Contributions and grants |
$3,338,555 |
Special events |
$1,724,826 |
Investment return, net |
$491,278 |
In-kind revenue |
$12,900 |
Other income |
$7,360 |
Total Income |
$5,574,919 |
- Programs: 73%
- Fundraising: 21%
- Administrative: 6%
Total Income |
$5,574,919 |
Program expenses |
$2,404,074 |
Fundraising expenses |
$698,844 |
Administrative expenses |
$227,993 |
Other expenses |
$0 |
Total expenses: |
$3,330,911 |
Income in Excess of Expenses |
$2,244,008 |
Beginning Net Assets |
$2,041,275 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$4,285,283 |
Total Liabilities |
$1,953,212 |
Total Assets |
$6,238,495 |
Note: According to IRSF's 2019 audited financial statements, the organization received in-kind contributions totaling $12,900 in the form of office space.