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Year, State Incorporated
1993, MA
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Stated Purpose
"to provide research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL."
VHL Alliance (VHLA) reports that it provides education, support, clinical care, research, and awareness to VHL patients, caregivers, and the medical community. The organization indicates that it has created Clinical Care Centers for VHL patients worldwide, which serve to coordinate care, promote timely screenings, and act as a source of information and support. VHLA states that it works to empower patients to actively manage their health by making educated decisions including seeking the best of care. The organization provides a toll-free hotline, a peer mentoring program, sta? monitored social media groups, quarterly newsletters, annual national family meetings, facilitated telephone discussion groups, regional meetings and gatherings, and printed materials including the VHL Handbooks and VHL Vignettes.
For the year ended June 30, 2019, VHL Alliance's program expenses were:
Research |
$491,039 |
Education |
$289,064 |
Total Program Expenses: |
$780,103 |
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Chief Executive
Chandra Clark, Executive Director
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Compensation*
$0
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Chair of the Board
Camron King
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Chair's Profession / Business Affiliation
President and Founder, Oakwood Strategic, LLC
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Board Size
16
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Paid Staff Size
4
*2020 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Note: Ms. Clark was hired as VHLA's Executive Director in November 2020 and compensation information is not yet available. Prior to that, Ilene Sussman served as CEO earning $111,298 in 2018.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Cause- related marketing (affinity credit cards, consumer product sales, etc.)
Fundraising costs were 8% of related contributions. (Related contributions, which totaled $1,039,281, 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 VHL Alliance's audited financial statements for the year ended June 30, 2019.
Source of Funds |
Contributions, general |
$924,120 |
In-kind donations |
$73,749 |
Conference registrations |
$30,150 |
Grants |
$30,000 |
Investment return |
$23,427 |
Contributions, research |
$11,412 |
Other income |
$2,529 |
Sales, promotional materials |
$807 |
Total Income |
$1,096,194 |
- Programs: 90%
- Fundraising: 9%
- Administrative: Less than 1%
Total Income |
$1,096,194 |
Program expenses |
$780,103 |
Fundraising expenses |
$81,536 |
Administrative expenses |
$12,428 |
Other expenses |
$0 |
Total expenses: |
$874,067 |
Income in Excess of Expenses |
$222,127 |
Beginning Net Assets |
$1,196,823 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$1,418,950 |
Total Liabilities |
$239,176 |
Total Assets |
$1,658,126 |
Note: As reported in the organization’s audited financial statements for the year ended June 30, 2019, VHLA received in-kind donations totaling $73,749 in the form of speaker fees and travel ($56,559), software and technical support ($17,190).