Organizations Filed Purposes:
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
Research - We raise additional funds in the private sector in order to accelerate further understanding of the disease through research. MDF supports both clinical and scientific research with a goal of finding a treatment and eventually a cure for this chronic, degenerative disease.
Education - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals.
Advocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support.
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 |
|---|
| Molly White | CEO | 60 | $224,747 |
| Leah Hellerstein | PROGRAM DIRECTOR | 40 | $131,178 |
| Joel Revill | Director | 1 | $0 |
| John Fitzpatrick | Director | 1 | $0 |
| David Berman | Director | 1 | $0 |
| David Herbert | Treasurer | 5 | $0 |
| Elizabeth Florence | Secretary | 5 | $0 |
| Martha Montag Brown | VICE-CHAIRMAN | 5 | $0 |
| Jeremy Kelly | Chairman | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202041849349300129_public.xml