Organizations Filed Purposes:
TO PROVIDE INFORMATION ABOUT THE BIRTH DEFECT OF SPINA BIFIDA AND ITS RELATED CONDITIONS AND SUPPORT TO INDIVIDUALS LIVING WITH IT THROUGH EDUCATION, ADVOCACY, RESEARCH, AND SERVICE; TO FACILITATE RESEARCH INTO THE CAUSES, EFFECTS, AND TREATMENT OF SPINA BIFIDA; AND TO EDUCATE AND TRAIN THE PROFESSIONALS INVOLVED IN THE TREATMENT OF SPINA BIFIDA.
TO PROMOTE THE PREVENTION OF SPINA BIFIDA AND ENHANCE THE LIVES OF ALL AFFECTED.
RESEARCH AND CLINICAL CARE - THE SPINA BIFIDA ASSOCIATION (THE ASSOCIATION) DEVELOPED THE SPINA BIFIDA COLLABORATIVE CARE NETWORK (SBCCN) TO IMPROVE THE HEALTH CARE OF PEOPLE WITH SPINA BIFIDA, ENABLING THEM TO HAVE BETTER CARE. THE SBCCN, WHEN COMPLETED, WILL BUILD A SYSTEM THAT MONITORS, TRACKS, AND EVALUATES CARE PROVIDED IN SPINA BIFIDA CLINICS AND OTHER HEALTH CARE SETTINGS. THE SBCCN IS MADE UP OF PEOPLE OF DIFFERENT BACKGROUNDS AND EXPERIENCES: SPINA BIFIDA ASSOCIATION (SBA) STAFF, CHAPTER LEADERS, DOCTORS, NURSES, PSYCHOLOGISTS, THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), PARENTS OF CHILDREN WITH SPINA BIFIDA, AND ADULTS WITH SPINA BIFIDA. THE ASSOCIATION WORKED IN CONJUNCTION WITH THE NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES TO CONTINUE RESEARCH THROUGH THE NATIONAL SPINA BIFIDA PATIENT REGISTRY (NSBPR). THE SPINA BIFIDA COLLABORATIVE CARE NETWORK PRODUCED GUIDELINES FOR THE CARE OF PEOPLE LIVING WITH SPINA BIFIDA WHICH INCLUDED RESEARCH FROM THE NSBPR.
EDUCATION - THE ASSOCIATION'S EDUCATION PROGRAMS PROVIDE PARENTS, CAREGIVERS AND PERSONS LIVING WITH SPINA BIFIDA WITH TOOLS AND RESOURCES AT CRITICAL POINTS IN DEVELOPMENT AND TRANSITION. EDUCATION AND INFORMATIONAL RESOURCES WERE PROVIDED TO OVER 325,000 PEOPLE WITH SPINA BIFIDA, PARENTS, AND CAREGIVERS AS WE EXPANDED OUR REACH IN 2019 AS A RESULT OF INCORPORATING SOCIAL MEDIA.
MEMBER SERVICES/CHAPTER DEVELOPMENT - THE ASSOCIATION PROMOTES THE GROWTH AND DEVELOPMENT OF ITS 17 CHAPTERS THROUGH TECHNICAL ASSISTANCE IN CAPACITY BUILDING, COMMUNICATIONS, PROGRAMMATIC RESOURCES AND GRANTS.
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 |
|---|
| Sara Struwe | PRESIDENT AND CEO | 37.5 | $140,400 |
| Glenrae Brown | CHIEF OPERATING OFFICER | 37.5 | $110,250 |
| Mckay Tolboe | BOARD MEMBER | 2 | $0 |
| Marie Thoming | BOARD MEMBER | 2 | $0 |
| Paula Peterson Msn Aprn | BOARD MEMBER | 2 | $0 |
| Wilson Neyland | BOARD MEMBER | 2 | $0 |
| David Morrissey | BOARD MEMBER | 2 | $0 |
| David B Joseph Md | BOARD MEMBER | 2 | $0 |
| Brad Dicianno | BOARD MEMBER | 2 | $0 |
| Michael Harty Jr | CHAIR-ELECT | 2 | $0 |
| Maria Bournias Esq Cpa | TREASURER/SECRETARY | 5 | $0 |
| Megan Sorenson | IMMEDIATE PAST CHAIR | 2 | $0 |
| Nicole Gower | CHAIR | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202013089349300801_public.xml