Organizations Filed Purposes:
SUPPORT AND EMPOWER PATIENTS AND FAMILIES AFFECTED BY NIEMANN-PICK DISEASE THROUGH EDUCATION, COLLABORATION, AND RESEARCH.
FAMILY SUPPORT - SUPPORT SERVICES TO FAMILIES WHO HAVE A FAMILY MEMBER DIAGNOSED WITH NIEMANN-PICK DISEASE AND PATIENT ADVOCACY EFFORTS. EMOTIONAL SUPPORT TO INDIVIDUALS AND FAMILIES DEALING WITH ALL TYPES OF NIEMANN-PICK DISEASE, ASSISTANCE THROUGH CRISES, INFORMATION AND IDEAS ABOUT ISSUES SUCH AS DOCTORS, CLINICS, INSURANCE COMPANIES AND OTHER HEALTH AND HUMAN SERVICE PROGRAMS AND PRACTICAL SUGGESTIONS ABOUT DAY-TO-DAY CARE. COMMUNICATIONS INLCUDING MONTHLY NEWSLETTERS, E-NEWS, AND SOCIAL MEDIA NEWS UPDATES. THE ANNUAL NNPDF FAMILY SUPPORT AND MEDICAL CONFERENCE BRINGS TOGETHER FAMILIES, SCIENTISTS, AND MEDICAL PROFESSIONALS TO SHARE INFORMATION AND PROVIDE SUPPORT.
RESEACH SUPPORT - NNPDF SUPPORT OVER 450 DIAGNOSED FAMILIES AT ALL STAGES OF THEIR NIEMANN-PICK DISEASE JOURNEY. WE PROVIDE ACCURATE UP-TO-DATE INFORMATION ON THE LATEST ADVANCES IN MEDICINE AND SCIENCE RELATED TO NPD. PROVISION AND MONITORING OF SCIENTIFIC RESEARCH GRANTS AND FELLOWSHIPS TO RESEARCH SCIENTISTS ACROSS THE UNITED STATES. THERE WERE NO NEW GRANTS OR FELLOWSHIPS IN 2019.
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 |
|---|
| Joslyn Crowe | EXECUTIVE DIRECTOR | 40 | $127,480 |
| Becky Mcguire | DIRECTOR | 1 | $0 |
| Liz Heinze | DIRECTOR | 1 | $0 |
| Meghann Ferguson | DIRECTOR | 1 | $0 |
| Darrile Papier | DIRECTOR | 1 | $0 |
| Chrystelle Bougault | DIRECTOR | 1 | $0 |
| Anne Oconnor-Smith | INTERIM TREASURER | 1 | $0 |
| Corinne Ward | SECRETARY | 1 | $0 |
| Lisa Chavez | VICE CHAIR | 2 | $0 |
| Justin Hopkin | CHAIR | 4 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202043189349313004_public.xml