National Tuberous Sclerosis Association meets the 20 Standards for Charity Accountability.
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Year, State Incorporated
1975, CA
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Also Known As
TS Alliance
TSA
Tuberous Sclerosis Alliance
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Affiliates
Tuberous Sclerosis Alliance Endowment Fund
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Stated Purpose
"to find a cure for tuberous sclerosis complex while improving the lives of those affected."
The National Tuberous Sclerosis Association (TS Alliance) reports that it develops programs and provides support services and resource information for individuals impacted by tuberous sclerosis complex (TSC). The organization also sponsors TSC research and provides public and professional education programs to heighten awareness of the disease. In 2019, TS Alliance reports it launched its TSC-Associated Neuropsychiatric Disorders (TAND) initiative to address one of the most challenging manifestations of TSC for individuals, parents, and caregivers.
For the year ended December 31, 2019, National Tuberous Sclerosis Association's program expenses were:
Research |
$2,590,463 |
Family services |
$929,277 |
Public health education |
$439,992 |
Government relations |
$165,225 |
Professional education |
$92,979 |
Total Program Expenses: |
$4,217,936 |
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Chief Executive
Kari Rosbeck, President and Chief Executive Officer
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Compensation*
$231,864
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Chair of the Board
Chris Russell
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Chair's Profession / Business Affiliation
Chief Executive Officer, Spire Hospitality
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Board Size
27
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Paid Staff Size
20
*2019 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Note: Steven Roberds, Chief Scientific Officer, was the highest paid employee in 2019, receiving $237,599 in compensation.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements, Print advertisements (newspapers, magazines, etc.), Cause- related marketing (affinity credit cards, consumer product sales, etc.), Other
TS Alliance incurred joint costs of $79,827 for informational materials and activities that included fundraising materials. Of those costs $39,914 was allocated to program expenses and $39,913 was allocated to fundraising expenses.
Fundraising costs were 20% of related contributions. (Related contributions, which totaled $5,591,284, 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 National Tuberous Sclerosis Association's audited financial statements - consolidated for the year ended December 31, 2019.
Source of Funds |
Contributions |
$3,021,932 |
Special events, net |
$2,421,438 |
Investment income |
$767,563 |
Contracts |
$247,384 |
Interest and dividends |
$191,528 |
Conferences |
$174,381 |
Memorials and honorariums |
$102,250 |
Federated funding |
$45,664 |
Other income |
$714 |
Total Income |
$6,972,854 |
- Programs: 72%
- Fundraising: 19%
- Administrative: 9%
Total Income |
$6,972,854 |
Program expenses |
$4,217,936 |
Fundraising expenses |
$1,135,609 |
Administrative expenses |
$542,410 |
Other expenses |
$0 |
Total expenses: |
$5,895,955 |
Income in Excess of Expenses |
$1,076,899 |
Beginning Net Assets |
$8,679,688 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$9,756,587 |
Total Liabilities |
$665,678 |
Total Assets |
$10,422,265 |
Note: According to the organization's audited financial statements - consolidated - for the year ended December 31, 2019, TS Alliance received in-kind gifts totaling $192,759 in the form of research ($121,090), event and advertising services ($37,174), investment management ($27,856), and donated goods ($6,639).