Sturge-Weber Foundation

The stronger the wind, the tougher the trees.

aka SWF   |   Houston, TX   |  www.sturge-weber.org

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.

Ruling year info

1988

Founder and CEO

Karen Fisher Ball

Main address

12345 Jones Road, Suite 125

Houston, TX 77070 USA

Show more contact info

EIN

74-2485813

NTEE code info

Professional Societies, Associations (G03)

Alliance/Advocacy Organizations (H01)

Birth Defects (G20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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 through collaborative education, advocacy, research and friendly support.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Care and Share Program

The Sturge-Weber Foundation's international programs include individual support and referral, educational publications and multi-media presentations for over one million affected individuals. We sponsor international and regional patient conferences, medical symposiums,fund scientific and clinical research.

Population(s) Served
Adults

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 1989

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of new donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of grants received

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of free participants in conferences

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of list subscribers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of individuals attending coalition meetings

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of testimonies offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Dollars donated to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Number of overall donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of first-time donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Care and Share Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Vision of the Sturge-Weber Foundation is that in all areas of life – public, professional, personal – these goals will be achievable for our members.
In Awareness – when the public will be able to see past the disability to the person.
In Empowerment – when families and individuals will be able to obtain the medical care, employment, education, respect and personal achievement they seek
In Research - when the pace of discovery will not be hampered by lack of resources and will lead continually toward a cure and advances in treatment.

• Raise $250,000 to support seed grants
• Raise $250,000 to support fellowships
• Raise $250,000 for foundation infrastructure and staffing
• Raise $100,000 for animal models and biobank
• Raise $25,000 for Genomic testing
• Raise $25,000 to continue and improve the International Registry
• Invest in young investigators for next generation key opinion leaders
• Expand global initiatives for clinical and scientific research
• Continue one on one support with newly diagnosed patients and their families
• Research and testing for aesthetic treatments that are non or minimally-invasive with more
predictable outcomes

Education - $302,000.00
• Awareness campaigns and advocacy
• Sturge-Weber Foundation international research network (SWFIRN)
• Education forums for patients and families nationwide
• Professionally - healthcare providers and educators
• Patients and caregiver support
• Patient Engagement Network (PEN)

Support - $185,000.00
• One on one and online counseling to patients and families
• Medical travel
• Scholarships to attend conferences
• Public awareness campaigns
• Fundraising campaigns

Research - $112,000.00
• Clinical and Scientific Investigation
• Bio Markers
• Clinical Testing
• Clinical Surveys
• Gene Mutation Investigation
• New Clinical Care Network – 23 centers and 2 centers in the application process
• 9 international centers and physicians in collaboration with SWF

• Fostered and funded $802,000 for scientific research investigations ( Direct Funding -
$320,000; Sponsored Meetings and Advocacy - $422,000; International Registry - $60,000)
• Centers of Excellence now the SWF Clinical Care Network
• First annual SWF Clinical Care Network Conference held October 1-3, 2017 | New Orleans, LA
• Provide care and referral to patients in over 103 countries such as: India, Canada, Belgium,
Australia, Poland, Great Britain, China, Japan, Puerto Rico, Italy, Samaria
• Developed network of partnerships at National Institutes of Health, FDA, academies, umbrella
organizations and industry
• Established tissue donation program
• Partnered with researchers to find GNAQ gene mutation
• Continued one on one support to patients and families through the psychological and physical
pain of SWS
• Chief Scientific Officer and Chief Clinical Strategist positions for SWF were created and filled in
2016
• Provide 2nd recipient with 2017 Lisa's Fellowship Grant ($50,000) for gene research

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve the caregivers, patients, scientists, clinicians and industry. Together we education, advocate and build relationships.

  • How is your organization collecting feedback from the people you serve?

    SMS text surveys, Electronic surveys (by email, tablet, etc.),

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

Sturge-Weber Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Sturge-Weber Foundation

Board of directors
as of 05/18/2022
SOURCE: Self-reported by organization
Board chair

Curt Stanton

No affiliatioin

Karen Ball

The Sturge-Weber Foundation

Crystal Elliers

Woody Crouch

Witney Arch

Steve Emmons

Kremena Linguiti

Don Willard

Molly Speer

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/18/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/18/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
Policies and processes
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.