What The Sturge-Weber Foundation does

The Sturge-Weber Foundation is a 501(c)(3) nonprofit organization founded in 1987 by Kirk and Karen Ball after their daughter was diagnosed with Sturge-Weber syndrome. Headquartered in Aurora, Colorado with a secondary office in Sicklerville, New Jersey, and a small 1-10 person staff, the foundation serves patients and families affected by Sturge-Weber syndrome (SWS), Port-Wine Birthmarks (PWB), and Klippel-Trenaunay syndrome (KT/KTS), as well as the clinicians and researchers who treat them. Its core offerings are a portfolio of coordinated services rather than a single product: a mobile app for tracking seizures, symptoms, medications, and reminders (with all data stored locally on-device for privacy); the SWF Clinical Care Network spanning 25+ specialized centers worldwide; and the SWF International Research Network (SWFIRN), which links investigators and develops consensus guidelines. Supporting programs include the Webster's World comfort bear program, scholarships (Sciton Cares, UCB Family Epilepsy, RARE IS, Kimmi's Sunflower Fund), the Branches Out magazine, educational resource libraries, mini-summits, and biennial family reunions.

Revenue is generated through a diversified, donation-centric model: individual donations (including the Legacy Leaders planned-giving program at $250, $500, and $1,000+ tiers), corporate sponsorships from more than ten pharma, dermatology, and medical-device companies (including AbbVie, UCB, Sciton, Candela, Sofwave, Alastin, Qlaris, and others), government and private grants, merchandise sales through an online shop, and the SWF Giving Market, an affiliate marketplace in which member-owned businesses donate a portion of proceeds. All core patient and family services are provided free of charge. The foundation's go-to-market is community-led, relying on the website, social media (Facebook, Instagram, YouTube, LinkedIn, X), Facebook support groups, virtual chats, in-person events, peer-to-peer fundraising, and a network of 25+ clinical care centers for distribution and acquisition.

Name

The Sturge-Weber Foundation

Legal name

The Sturge-Weber Foundation

Website

https://sturge-weber.org

Company type

Private

Founded year

1987

Operating status

Operating

Headcount range

1–10 employees

Short description

The Sturge-Weber Foundation is a 501(c)(3) nonprofit founded in 1987 that supports patients and families affected by Sturge-Weber syndrome, port-wine birthmarks, and Klippel-Trenaunay syndrome through a global Clinical Care Network, a research network, and community programs, funded by donations, corporate sponsorships, and grants.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease support
• Patient advocacy services
• Clinical care network
• Vascular birthmark research
• Nonprofit patient services

Headquarters

HQ city

Aurora

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: The foundation is funded primarily through donations from individuals, including one-time gifts, monthly recurring donations, and Legacy Leaders planned giving programs ($250, $500, or $1,000+ tiers). Donations are accepted online, by phone, and by mail.
2. Corporate Sponsorships: Corporate sponsors (pharmaceutical companies, dermatology practices, foundations) provide financial support. Sponsors include AbbVie, Accure Acne, Alastin, Candela, Cytrellis, Sciton, Sofwave, UCB, Qlaris, and others.
3. Grants: The foundation receives government and private grants as a rare disease organization.
4. Giving Market: The Giving Market is a connections marketplace where member-owned businesses are featured. Participants donate a portion of their proceeds to support SWF's mission.
5. Merchandise Sales: The foundation sells official SWF branded merchandise through its online shop.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels8 records

Core offering

The Sturge-Weber Foundation is a 501(c)(3) nonprofit organization that provides patient and family support, education, advocacy, and research coordination for individuals affected by Sturge-Weber syndrome, Port-Wine Birthmarks, and Klippel-Trenaunay syndrome. It operates a global Clinical Care Network of 25+ specialized medical centers, the SWF International Research Network (SWFIRN), support groups, scholarship programs, and a privacy-first mobile app for tracking medical events. Core operations are funded by individual donations, corporate sponsorships, and grants.

Product overview

The Sturge-Weber Foundation operates as a non-profit organization with a portfolio of interconnected services rather than a single unified product. The core offerings include the SWF Mobile App for personal health tracking, the Clinical Care Network (CCN) spanning 25+ medical centers worldwide for comprehensive patient care, and the SWF International Research Network (SWFIRN) for advancing scientific research. Supporting programs include the Webster's World comfort bear program, scholarship opportunities, the Branches Out magazine publication, educational resources including video libraries and documents, the Giving Market for member businesses, and annual Family Reunion conferences. Professional events and educational summits serve the medical and research community. All offerings are tied together by the foundation's mission to improve quality of life for individuals with Sturge-Weber syndrome and associated conditions.

Differentiator

Problem solved

Functional benefit

Brands

• Webster's World: A teddy bear program where the mascot Webster travels worldwide to give comfort and snuggles to those in the hospital with SWS-related procedures.
• Blazing Warriors
• Branching Out Magazine
• SWF Clinical Care Network
• SWF International Research Network (SWFIRN)

Products and services

• SWF Mobile App A mobile application for individuals and families affected by Sturge-Weber syndrome and related conditions that allows users to track medical events (seizures, symptoms), medications, personal health observations, notes, and reminders, with all data stored locally on the user's device for privacy.
• SWF Clinical Care Network (CCN) A network of 25+ clinical care centers worldwide providing comprehensive multidisciplinary care (dermatology, neurology, ophthalmology, mental health) for adults and children with Port-Wine birthmarks, Sturge-Weber syndrome, and Klippel-Trenaunay syndrome, accessed through physician referrals and the foundation's directory.
• SWF International Research Network (SWFIRN) A global research collaboration network bringing together experts to conduct research, develop better treatment models, establish consensus guidelines, and power clinical studies for Sturge-Weber syndrome and related vascular conditions.
• SWF Scholarship Programs Scholarship and sponsorship programs for patients and families, including Kimmi's Sunflower Fund, Sciton Cares Sponsorship Program (laser treatment support), UCB Family Epilepsy Scholarship Program, and the RARE IS Scholarship, supporting educational opportunities and treatment access.
• Webster's World Program A comfort program featuring the foundation's mascot teddy bear Webster, who travels worldwide to provide comfort to individuals undergoing SWS-related procedures such as port-wine birthmark laser treatments, and to those recovering from seizures or surgeries.
• SWF Family Reunion Conference A biennial family conference event bringing together SWS families for connection, shared experiences, respite time, sightseeing, fireside chats, and informative seminars with doctors, held in person with sponsorship opportunities for corporate partners.
• SWF Giving Market A connections marketplace where SWF member-owned businesses are featured and participants donate a portion of their proceeds to support the SWF community and SWS research efforts.
• Professional Conferences and Educational Events Events designed to unite the research and medical communities, including CCN/SWFIRN Meetings, Animal Modeling presentations, and professional conferences featuring researchers and clinicians (e.g., Kristen Kelly, Lisa Arkin, Anne Comi, Ben Frankfort) for clinicians and researchers.

Quantifiable outcome

• 8,049 families supported through foundation programs
• +2 more outcomes

Named customers4 records

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

16 partnerships are on record, tiered core and minor.

• Brain Vascular Malformation ConsortiumcoreStrategic or Co-development PartnerThe foundation partners with the Brain Vascular Malformation Consortium to advance research and clinical care for vascular birthmark conditions. This consortium brings together multidisciplinary researchers and clinicians to study and treat complex vascular malformations associated with Sturge-Weber syndrome and related conditions.
• AbbVieminorOthersAbbVie is listed among the foundation's generous corporate sponsors, providing financial support for the foundation's programs and mission to improve quality of life for people with SWS and associated conditions.
• UCBminorOthersUCB is a pharmaceutical company sponsor of the foundation, also offering the UCB Family Epilepsy Scholarship Program in partnership with SWF, supporting educational opportunities for patients and families.
• ScitonminorOthersSciton, a laser technology company, sponsors the foundation and offers the Sciton Cares Sponsorship Program for patients, supporting access to laser treatments for port-wine birthmarks.
• CandelaminorOthersCandela is a dermatology and aesthetic device company listed as a generous sponsor of the foundation.
• SofwaveminorOthersSofwave is listed as a generous sponsor supporting the foundation's mission.
• AlastinminorOthersAlastin is listed as a generous sponsor supporting the foundation's mission.
• Accure AcneminorOthersAccure Acne is listed as a sponsor supporting the foundation.
• CytrellisminorOthersCytrellis is listed as a sponsor of the foundation.
• QlarisminorOthersQlaris is listed as a sponsor of the foundation.
• Dircks FoundationminorOthersThe Dircks Foundation is listed as a generous sponsor supporting the foundation's mission.
• Burkhart Pediatric and Adolescent DermatologyminorOthersBurkhart Pediatric and Adolescent Dermatology is listed as a sponsor supporting the foundation.
• Laser and SkinminorOthersLaser and Skin is listed as a sponsor of the foundation.
• LuntronicsminorOthersLuntronics is listed as a sponsor of the foundation.
• Washington Institute of Dermatologic Skin LaserminorOthersThe Washington Institute of Dermatologic Skin Laser is listed as a sponsor of the foundation.
• Shore LawminorOthersShore Law (intellectual property law firm) is listed as a sponsor of the foundation.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Vascular Birthmarks Foundation: A nonprofit dedicated to vascular birthmarks, including port-wine birthmarks and Sturge-Weber syndrome, that provides family support, physician referrals, and education. Most direct comparable to SWF on patient population and program model.
• National Organization for Vascular Anomalies (NOVA): A patient advocacy nonprofit for children and adults with vascular anomalies, including Klippel-Trenaunay syndrome, that runs support networks, education, and research funding. Directly comparable to SWF on KT/PWB overlap and patient-support operating model.
• Children's Tumor Foundation: A major rare-disease nonprofit for neurofibromatosis that funds research, runs a clinical care network, and supports patients/families. Closely analogous to SWF's research-network-plus-family-support model in a similarly rare condition.
• Tuberous Sclerosis Alliance: A rare-disease nonprofit combining research funding, a clinical care network, and family/community support for tuberous sclerosis complex. Comparable to SWF on neurological rare-disease mission, network-of-clinics structure, and mixed fundraising approach.
• Cure SMA: A rare-disease nonprofit for spinal muscular atrophy that combines research funding, patient support, advocacy, and clinical-care coordination. Highly analogous operating model to SWF despite serving a different condition.

Broad incumbents

• Epilepsy Foundation: A large, established nonprofit addressing epilepsy broadly, including seizure-related conditions like Sturge-Weber syndrome. Comparable on the neurological/seizure-management dimension and as a potential funder/partner, but far broader in scope than SWF's SWS focus.
• National Organization for Rare Disorders (NORD): An umbrella rare-disease advocacy organization representing ~300 patient organizations, including Sturge-Weber Foundation historically. Comparable as the broader industry-association counterpart and a peer for policy/grant-funding strategy.
• Global Genes: A rare-disease advocacy alliance that supports more than 600 patient organizations with education, tools, and connections. Comparable to SWF as a rare-disease capacity-building counterpart and a co-marketing partner during awareness months.

Emerging players

• Child Neurology Foundation: A nonprofit connecting child neurologists, patients, and families for education and support across pediatric neurological conditions, including SWS. Comparable on the professional-network and family-support overlap with SWF's clinician/research community.

Regional players

• Sturge-Weber UK: A UK-based charity providing support, information, and research funding for people with Sturge-Weber syndrome in the United Kingdom. Comparable on disease focus and family-support mission, but geographically focused on the UK rather than competing directly with SWF in the US.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/sturgeweber
• YouTubeyoutube.com/@thesturgeweberfoundation
• Facebookfacebook.com/sturgeweberfoundation
• LinkedInlinkedin.com/company/the-sturge-weber-foundation
• Instagraminstagram.com/thesturgeweberfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Sturge-Weber Foundation