Dravet Syndrome Foundation does not meet the following 5 Standards for Charity Accountability:
Standard 3 (Frequency and Attendance of Board Meetings)
An organization shall have a minimum of three evenly spaced meetings per year of the full governing body with a majority in attendance, with face-to-face participation. A conference call of the full board can substitute for one of the three meetings of the governing body. For all meetings, alternative modes of participation are acceptable for those with physical disabilities.
DSF does not meet this Standard because:
- Although the board of directors held nine board meetings in 2019, only one was in person.
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.
DSF 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 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.
DSF does not meet this Standard because:
- The organization states it does not have an annual report covering activities conducted in 2019.
Standard 18 (Privacy for Written Appeals & Internet Privacy)
Address privacy concerns of donors by (a) providing in written appeals, at least annually, a means (e.g., such as a check off box) for both new and continuing donors to inform the charity if they do not want their name and address shared outside the organization, (b) providing a clear, prominent and easily accessible privacy policy on any of its websites that tells visitors (i) what information, if any, is being collected about them by the charity and how this information will be used, (ii) how to contact the charity to review personal information collected and request corrections, (iii) how to inform the charity (e.g., a check off box) that the visitor does not wish his/her personal information to be shared outside the organization, and (iv) what security measures the charity has in place to protect personal information.
DSF does not meet this Standard because the privacy policy on its website, https://dravetfoundation.org, does not indicate:
- What security measures are in place to protect personal information that is collected.
Standard 19 (Cause Related Marketing)
Clearly disclose how the charity benefits from the sale of products or services (i.e., cause-related marketing) that state or imply that a charity will benefit from a consumer sale or transaction. Such promotions should disclose, at the point of solicitation: (a) the actual or anticipated portion of the purchase price that will benefit the charity (e.g., 5 cents will be contributed to abc charity for every xyz company product sold), (b) the duration of the campaign (e.g., the month of October), (c) any maximum or guaranteed minimum contribution amount (e.g., up to a maximum of $200,000).
DSF does not meet this Standard because, in the past year, the organization participated in promotions for the sale of consumer goods that indicated that the organization would benefit from these purchases. The promotions, however, did not specify:
- The actual or anticipated amount of the purchase price that will benefit the organization.
Dravet Syndrome Foundation meets the remaining 15 Standards for Charity Accountability.
The Dravet Syndrome Foundation (DSF) funds research toward better treatments and a cure of Dravet syndrome and related epilepsies by awarding research grants to qualified scientists and doctors. The organization produces an annual Research Roundtable Meeting to provide the opportunity for researchers and clinicians to collaborate and discuss better treatment options and a roadmap toward a cure, and how to best facilitate both. Through DSF's International Patient Assistance Grant Program, the organization provides grants to cover expenses not covered by medical insurance.
For the year ended December 31, 2019, Dravet Syndrome Foundation's program expenses were:
| Research |
$660,894 |
| Patient and family services |
$118,861 |
| Professional education and meetings |
$78,153 |
| Total Program Expenses: |
$857,908 |
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Chief Executive
Mary Anne Meskis, Executive Director
-
Compensation*
$128,000
-
Chair of the Board
Nicole Ed.
-
Chair's Profession / Business Affiliation
Former Scientist and Science Educator
-
Board Size
7
-
Paid Staff Size
6
*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, Other
Fundraising costs were 5% of related contributions. (Related contributions, which totaled $1,607,634, 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, 2019.
| Source of Funds |
| Special events, net |
$1,041,379 |
| Contributions and grants |
$566,255 |
| Program service revenue |
$379,531 |
| Investment return, net |
$42,174 |
| Other income |
$1,131 |
| Total Income |
$2,030,470 |
- Programs: 74%
- Administrative: 19%
- Fundraising: 7%
| Total Income |
$2,030,470 |
| Program expenses |
$857,908 |
| Fundraising expenses |
$87,650 |
| Administrative expenses |
$216,575 |
| Other expenses |
$0 |
| Total expenses: |
$1,162,133 |
| Income in Excess of Expenses |
$868,337 |
| Beginning Net Assets |
$2,473,161 |
| Other Changes In Net Assets |
$0 |
| Ending Net Assets |
$3,341,498 |
| Total Liabilities |
$276,857 |
| Total Assets |
$3,618,355 |