Dravet Syndrome Foundation
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
Dravet Syndrome Foundation meets the 20 Standards for Charity Accountability.
Stated Purpose:
"to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families."
Year, State Incorporated:
2009, CT
The Dravet Syndrome Foundation (DSF) promotes and supports research regarding Dravet syndrome and related epilepsies. The organization funds research towards better treatments and a cure of Dravet syndrome and related epilepsies by awarding research grants to qualified scientists and doctors. DSF produces an annual Research Roundtable Meeting to provide the opportunity for researchers and clinicians to collaborate, discuss better treatment options, and create a roadmap toward a cure. Through the International Patients Assistance Grant Program, DSF provides grants to cover expenses not covered by medical insurance.
For the year ended December 31, 2023, Dravet Syndrome Foundation's program expenses were:
| Research | $1,096,459 |
| Patient and family services | $412,525 |
| Professional education and meetings | $150,433 |
| Total Program Expenses | $1,659,417 |
Chief Executive
Mary Anne Meskis, Executive Director
Compensation*
$156,224
Chair of the Board
Ted Odlaug, Ph.D.
Chair's Profession / Business Affiliation
Executive, Pharmaceutical and Biotechnology industries
Board Size
9
Paid Staff Size
10
*2023 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Internet, Direct mail appeals, Radio
Fundraising costs were 5% of related contributions. (Related contributions, which totaled $2,567,210, 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 Dravet Syndrome Foundation's audited financial statements for the year ended December 31, 2023.
Source of Funds
| Special events, net | $1,346,565 |
| Contributions and grants | $1,220,645 |
| Program service revenue | $471,472 |
| Investment return, net | $278,332 |
| Total Income | $3,317,014 |
Programs: 77% Fundraising: 6% Administrative: 17%
| Total Income | $3,317,014 |
| Total expenses: | $2,163,052 |
| Program expenses | $1,659,417 |
| Fundraising expenses | $129,212 |
| Administrative expenses | $374,423 |
| Other expenses | $0 |
| Income in Excess of Expenses | $1,153,962 |
| Beginning Net Assets | $5,760,744 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $6,914,736 |
| Total Liabilities | $595,166 |
| Total Assets | $7,509,902 |
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
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Meets Standards
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Standards Not Met
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Did Not Disclose
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Review in Progress
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Unable to Verify
Report completed by:
BBB Wise Giving Alliance