Organizations Filed Purposes:
THE ORGANIZATION WORKS TO SUPPORT PEOPLE WITH SPINA BIFIDA AS THEY REACH FOR THEIR GOALS AND PURSUE A MORE FULFILLING LIFE. THE ORGANIZATION IS A GROUP OF PARENTS, ADULTS WITH SPINA BIFIDA, AND DEDICATED PROFESSIONALS WORKING TOGETHER TO SUPPORT AND ENCOURAGE FAMILIES AND INDIVIDUALS THROUGHOUT THE GREATER NEW ENGLAND AREA. IT IS OUR GOAL TO ENRICH THE LIVES OF THOSE AFFECTED BY SPINA BIFIDA THROUGH EDUCATION, PARENTAL SUPPORT, SOCIAL NETWORKING, ADVOCACY AND PUBLIC AWARENESS.
EDUCATION AND SUPPORT FOR FAMILIES WITH PERSONS IMPACTED BY SPINA BIFIDA.
THE ORGANIZATION PROVIDES ACTIVITIES THAT ARE OPEN TO ALL TO PROVIDE EDUCATION RELATIVE TO THE EFFECTS OF SPINA BIFIDA. BLING/BEST, FAMILY AND INDIVIDUAL SUPPORT, AND OUTREACH & ADVOCACY ARE THE ORGANIZATION'S THREE MAJOR PROGRAMS. THE BLING/BEST PROGRAM IS A WEEKEND RETREAT FOR TEENAGERS WITH SPINA BIFIDA WHICH PROVIDES SUPPORT, EDUCATION, RECREATION AND SOCILIZATION FOR GREATER THAN 20 TEENS AND THEIR PARENTS. THESE PEER CONNECTIONS ARE VITAL FOR TEENS LEARNING TO LIVE WITH SPINA BIFIDA.VARIOUS TYPES OF FAMILY AND INDIVIDUAL SUPPORT IS ALSO PROVIDED TO INDIVIDUALS AND THEIR FAMILIES. PARTIES, DINNERS AND VARIOUS OTHER ACTIVITIES PROVIDE OPPORTUNITIES TO LEARN FROM EACH OTHER'S EXPERIENCES LIVING WITH SPINA BIFIDA. IN ADDITION, THE ORGANIZATION OFFERS FINANCIAL SUPPORT FOR UNREIMBURSED MEDICAL COSTS AND ENRICHMENT OPPORTUNITIES.THROUGH THE OUTREACH AND ADVOCACY PROGRAM, THE ORGANIZATION REACHES OUT AND RESPONDS TO MEDICAL PROFESSIONALS, NEW FAMILIES, AND OTHERS WHO EITHER HAVE QUESTIONS OR NEED-TO-KNOW MORE ABOUT SPINA BIFIDA
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 |
|---|
| Jean Bertschmann | EXECUTIVE DIRECTOR | 30 | $25,192 |
| Kirk Joslin | FORMER INTERIM EXECUTIVE DIRECTOR | 40 | $18,922 |
| Andrew Vacca | FORMER EXECUTIVE DIRECTOR | 40 | $8,842 |
| Aimee Williamson | DIRECTOR | 2 | $0 |
| Dan Holleran | DIRECTOR | 2 | $0 |
| Virginia Briggs | BOARD CHAIR | 5 | $0 |
| Linda Long Bellil | DIRECTOR | 2 | $0 |
| Dr Bob Burke | DIRECTOR | 2 | $0 |
| Amie Richards | DIRECTOR | 2 | $0 |
| Jason Paynich | DIRECTOR | 2 | $0 |
| John Wendell | CLERK | 5 | $0 |
| Brendan Sullivan | TREASURER | 5 | $0 |
| Amy Bois | VICE 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-990/202031399349300228_public.xml