Organizations Filed Purposes:
TO PROVIDE ASSISTANCE TO FAMILIES AFFECTED BY STURGE-WEBER SYNDROME AND PORT WINE BIRTHMARK CONDITIONS.
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) INSTITUIONS. 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.
THE FOUNDATION'S RESEARCH PROGRAM IS LEAD BY A GLOBAL TEAM OF RESEARCHERS THAT COMPRISE THE STURGE-WEBER FOUNDATION INTERNATIONAL RESEARCH NETWORK TO FACILITATE INNOVATIVE AND COLLABERATIVE RESEARCH INVESTIGATIONS. THE RESEARCH PROGRAM FUNDS A 50,000 LISA'S RESEARCH FELLOWSHIP, MULTIPLE TRAVEL GRANTS TO YOUNG INVESTIGATORS, MAINTAINS AN ONLINE 25,000 PATIENT FOR MAPPING CLINICAL DATA WITH DATA IN A BIO-RESPOSITORY. THE FOUNDATION ATTENDS NATIONAL CONFERENCES FOCUSED ON RESEARCH IN THE EYE, BRAIN, SKIN AND GENETIC EXPRESSIONS OF THE SYNDROME TO GENERATE AWARENESS AND ENGAGE YOUNG INVESTIGATORS TO JOIN THEIR CAUSE.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Karen L Ball | PRESIDENT/CE | 50 | $82,176 |
| Curt Stanton | DIRECTOR | 2 | $0 |
| Kris Sadens | DIRECTOR | 0 | $0 |
| Steve Peltier | TREASURER | 2 | $0 |
| Jeffrey Needham | DIRECTOR | 2 | $0 |
| Kremena Linguiti | DIRECTOR | 2 | $0 |
| Crystal Elliers | VICE CHAIR/S | 2 | $0 |
| Woody Crouch | DIRECTOR | 2 | $0 |
| Witney Arch | DIRECTOR | 0 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202003179349303540_public.xml