TSC Alliance
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
TSC Alliance meets the 20 Standards for Charity Accountability.
Stated Purpose:
"to improve quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support."
Year, State Incorporated:
1975, CA
Also Known As:
National Tuberous Sclerosis Association Tuberous Sclerosis Alliance
TSC Alliance reports that it provides support services and resource information for individuals impacted by tuberous sclerosis complex (TSC). The organization sponsors TSC research and provides public and professional education programs to heighten awareness of the disease. TSC Alliance provides outreach programs, educational resources, medical access assistance, and support services, such as community support groups and travel and lodging assistance, to individuals and families affected by TSC. Lastly, the organization advocates for federal and state appropriations for TSC research, and collaborates with government partners to drive TSC research forward and increase clinical care and treatment options for individuals with TSC.
For the year ended December 31, 2023, TSC Alliance's program expenses were:
Research: $5,022,281
Family services: $895,227
Public heath education: $554,030
Government relations: $188,742
Professional education: $100,161
Total Program Expenses: $6,760,441
Chief Executive
Kari L. Rosbeck, President and Chief Executive Officer
Compensation*
$255,423
Chair of the Board
William Joseph
Chair's Profession / Business Affiliation
Retired
Board Size
28
Paid Staff Size
23
*2023 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Note: Steven L. Roberds, Chief Scientific Officer, was the highest paid employee in 2023, receiving $263,771 in compensation.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio, Print advertisements
TSC Alliance incurred joint costs of $43,084 for informational materials and activities that included fund raising materials. Of those costs $21,542 was allocated to program expenses and $21,542.00 was allocated to fundraising expenses.
Fundraising costs were 18% of related contributions. (Related contributions, which totaled $6,426,412, 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 TSC Alliance's audited financial statements for the year ended December 31, 2023.
Source of Funds
| Special events, net | $1,274,008 |
| Individuals, companies and foundations | $4,979,316 |
| Memorials and honorariums | $87,622 |
| Federated funding | $48,667 |
| In-kind contributions | $36,799 |
| Contracts | $2,548,976 |
| Interest and dividends | $206,108 |
| Conferences | $266,377 |
| Other revenue | $995 |
| Realized and unrealized gain on investments, net | $636,900 |
| Total Income | $10,085,768 |
Programs: 79% Fundraising: 14% Administrative: 7%
| Total Income | $10,085,768 |
| Total expenses: | $8,543,266 |
| Program expenses | $6,760,441 |
| Fundraising expenses | $1,202,389 |
| Administrative expenses | $580,436 |
| Other expenses | $0 |
| Income in Excess of Expenses | $1,542,502 |
| Beginning Net Assets | $12,454,846 |
| Other Changes In Net Assets | $0 |
| Ending Net Assets | $13,997,348 |
| Total Liabilities | $2,194,485 |
| Total Assets | $16,191,833 |
Note: According to the organization's 2023 - consolidated – audited financial statements, TSC Alliance received in-kind gifts totaling $36,799 in the form of investment management ($22,081) and event and advertising services ($14,718).
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.
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Meets Standards
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Standards Not Met
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Review in Progress
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Unable to Verify
Report completed by:
BBB Wise Giving Alliance