Organizations Filed Purposes:
RAISE FUNDS TO PROMOTE EDUCATION AND AWARENESS; MEET EVER-INCREASING NEEDS OF INDIVIDUALS WITH GAUCHER DISEASE AND THEIR FAMILIES.
RAISE FUNDS TO ASSIST IN THE EFFORTS TO DISCOVER THE CAUSES, DIAGNOSES, TREATMENTS, AND PREVENTION OR CONTROL OF SYMPTOMS ASSOCIATED WITH GAUCHER'S DISEASE AND PROVIDE INFORMATION AND ASSISTANCE TO INDIVIDUALS WITH THE DISEASE AND TO INCREASE PUBLIC AWARENESS CONCERNING THIS DISORDER.
SUPPORT OF THE CARE PROGRAM, WHICH GRANTS FUNDS TO APPROXIMATELY 250 INDIVIDUALS, TO SUBSIDIZE, OR TO PURCHASE IN FULL, A HEALTH INSURANCE POLICY(PRIMARY, SECONDARY OR BOTH), TO WHICH THE PATIENT IS ENTITLED OR ELIGIBLE, BUT FOR WHICH THE PATIENT DOES NOT HAVE ADEQUATE PERSONAL RESOURCES TO ENROLL.
EDUCATION AND AWARENESS INITIATIVES THROUGHOUT THE U.S. THE PROGRAM INCLUDES A WEBSITE WITH EXPANSIVE CONTENT THAT IS REGULARLY UPDATED, MONTHLY BLOG POSTS ON GAUCHER DISEASE FROM MEDICAL THOUGHT LEADERS, MONTHLY E-NEWSLETTERS, HUMAN INTEREST STORIES IN FILM, DIGITAL AND WRITTEN MATERIALS,AN ANNUAL EDUCATIONAL SYMPOSIUM FOR PATIENTS AND PHYSICIANS, A CARRIER SCREENING PROGRAM AS WELL AS SERVICES TO PATIENTS (WITH INFORMATION, SUPPORT,AND RESOURCES) TO HELP THEM ACHIEVE AND MAINTAIN THEIR OPTIMAL HEALTH.
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 |
|---|
| Brian Berman | PRESIDENT | 24 | $200,000 |
| Amy Blum | CHIEF OPERATING OFFICER | 40 | $105,500 |
| Robin A Ely Md | DIRECTOR | 2 | $0 |
| Dennis L Berman | TREASURER | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202032599349301318_public.xml