Dravet Syndrome Foundation does not meet the following 3 Standards for Charity Accountability:
Standard 14 (Budget)
Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.
DSF does not meet this Standard because, when the organization provided 2022 budget information, it indicated that the budget:
- Did not identify total projected fundraising expenses.
- Did not identify total projected administrative expenses.
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 2021.
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.
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:
13
Dravet Syndrome Foundation meets the remaining 16 Standards for Charity Accountability.
The Dravet Syndrome Foundation (DSF) funds research to improve treatments and find a cure for 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 on 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, 2021, Dravet Syndrome Foundation's program expenses were:
| Research |
$570,885 |
| Patient and family services |
$269,448 |
| Professional education and meetings |
$90,798 |
| Total Program Expenses: |
$931,131 |
*2021 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Note: Veronica Hood, Scientific Director, was the highest paid employee, receiving $140,000 in compensation.
Method(s) Used:
Direct mail appeals, Internet, Invitations to fund raising events, Membership appeals, Planned giving arrangements
Fundraising costs were 3% of related contributions. (Related contributions, which totaled $1,487,354, 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, 2021.
| Source of Funds |
| Contributions and grants |
$856,375 |
| Program service revenue |
$693,507 |
| Special events, net |
$527,845 |
| Small Business Administration |
$103,134 |
| Investment return, net |
$25,600 |
| Total Income |
$2,206,461 |
- Programs: 74%
- Administrative: 23%
- Fundraising: 3%
| Total Income |
$2,206,461 |
| Program expenses |
$931,131 |
| Fundraising expenses |
$42,942 |
| Administrative expenses |
$291,250 |
| Other expenses |
$0 |
| Total expenses: |
$1,265,323 |
| Income in Excess of Expenses |
$941,138 |
| Beginning Net Assets |
$4,385,466 |
| Other Changes In Net Assets |
$0 |
| Ending Net Assets |
$5,326,604 |
| Total Liabilities |
$592,323 |
| Total Assets |
$5,918,927 |