Organizations Filed Purposes:
WORLDWIDE EDUCATION OF MEDICAL PROFESSIONALS AND FAMILIES, CYSTINOSIS RESEARCH FUNDING, AND FAMILY SUPPORT.
WORLDWIDE EDUCATION OF PATIENTS, FAMILIES AND MEDICAL PROFESSIONALS, ENCOURAGING CYSTINOSIS RESEARCH AND PROVIDING FAMILY SUPPORT.
EDUCATION: TO RAISE THE AWARENESS OF THE MEDICAL COMMUNITY AND GENERAL PUBLIC THROUGH MEDICAL MEETINGS, THE MEDIA, AND DISTRIBUTION OF LITERATURE. THE KEY AIMS ARE TO ALLOW INDIVIDUALS, MEDICAL PROFESSIONALS AND ORGANIZATIONS TO SHARE THEIR KNOWLEDGE ACROSS THE GLOBAL CYSTINOSIS COMMUNITY IN ORDER TO FURTHER UNDERSTANDING OF THIS ULTRA RARE DISEASE AND THE NECESSITY OF MEDICATION COMPLIANCE AMONG THE MEDICAL PROFESSIONALS AND PATIENT COMMUNITY, AND TO CONNECT TOGETHER FAMILIES AND INDIVIDUALS WHO ARE COPING WITH CYSTINOSIS TO REMOVE PAINFUL FEELINGS OF ISOLATION THAT ACCOMPANY THIS ULTRA-RARE DISEASE.
ADVOCATE: ENCOURAGE LEGISLATIVE SUPPORT FOR FUNDING OF THE NATIONAL INSTITUTES OF HEALTH AND NEWBORN SCREENING.
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 |
|---|
| Gloria Ramos | SECRETARY | 1 | $0 |
| Valerie Brown | EXECUTIVE DIRECTOR | 1 | $0 |
| Holly Reuter | BOARD MEMBER | 1 | $0 |
| Merle Mund | BOARD MEMBER | 1 | $0 |
| Frank Ritchie | 1ST VICE PRESIDENT | 8 | $0 |
| Bruce W Mund | TREASURER | 1 | $0 |
| Jean Hobbs Hotz | PRESIDENT | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202041229349301719_public.xml