Organizations Filed Purposes:
THE NEUROMUSCULAR DISEASE FOUNDATIONS (NDF) MISSION mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding for critical research focused on treatments and a cure.
To promote and fund research for genetic neuromuscular disorders and diseases. Additionally, the foundation may engage in any activities that are reasonably related to or in furtherance of its stated charitable purposes.
CLINICAL RESEARCH: Since 2006 NDF has been proactively seeking and funding clinical research projects to help understand GNE Myopathy (HIBM) and to hopefully help find treatments and cures. NDF is a world leader in funding scientists, universities and laboratories, the results of which have proven instrumental in how new studies are built.
Outreach & Education: A significant part of NDF's mission is preventing and suppressing the symptoms of GNEM in patients through screening and public education. NDF values the importance of educating physicians about this rare disease. We focus on educating the public about carrier screening aids, particularly for those in populations with higher carrier rates.
Patient & Carrier Advocacy: NDF strives to create a two-way connection between patients and scientists in order to maximize patient understanding about the latest research and treatment options being developed; and for physicians, scientists, and pharmaceutical companies to gain a better perspective, not only about patients needs and experiences, but also about how this impacts families as well.
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 |
|---|
| Lale Jackson Welsh | CEO | 40 | $180,000 |
| Nancy Lurie | Dir of Oper | 40 | $110,000 |
| Sogol Ashourpour | Director | 1 | $0 |
| Tahseen Mozaffar | Director | 1 | $0 |
| Michelle Halloosim | Director | 1 | $0 |
| Jason Taban | Director | 1 | $0 |
| David Havarim | Director | 1 | $0 |
| Tricia Mullins | Co-Chair | 1 | $0 |
| Ralph Loren | Co-Chair | 1 | $0 |
| Doran Adhami | Treasurer | 1 | $0 |
| Carol Gelbard | Director | 1 | $0 |
| Michael Banayan | Director | 1 | $0 |
| Carolyn Becher Esq | Secretary | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202023219349309537_public.xml