Sturge-Weber Foundation

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