Sturge Weber Foundation
Sturge Weber Foundation
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About this organization
Mission
The Sturge-Weber Foundation's (The SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.
About
The foundation drives patient engagement through diverse and robust projects, conferences and online support. The website is a rich resource of learning and uplifting stories of inspirational hope to cope with the diagnosis. The foundation sponsors an international conference every two years moving the location to allow fair access to all minimizing financial impact to attend. The foundation also sponsors regional educational conferences to build community in partnership with various clinical care network (CCN) institutions. The CCN's facilitate clinical studies and trials and annually establish goals which drive patient care and improve treatment. The foundation recently launched a task force initiative to build a rich volunteer network of knowledge and support around key areas impacting daily living and care. The Houston home office staff and remote office staff support all the above programs and projects and regularly meet to ensure strategic goals are met.
Interesting data from their 2020 990 filing
The non-profit's mission, as described in the filing, is “To provide assistance to families affected by sturge-weber syndrome and port wine birthmark conditions.”.
When describing its duties, they were characterized as: “To provide assistance to families affected by sturge-weber syndrome and port wine birthmark conditions.”.
- The non-profit has complied with legal regulations by reporting their state of operation as CO.
- As of 2020, the non-profit has reported a total of 3 employees on their form.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Has foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $500,000 and $1,000,000+.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is $21,538.
- The compensation policy for the CEO of the organization is not determined through an impartial evaluation and endorsement.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 8 independent voting members.
- The organization was formed in 1987.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $156,235 in salary, compensation, and benefits to its employees.
- The organization pays $82,672 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization has a business related family member transaction.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.