Organizations Filed Purposes:
FMDSA is a public health charity working towards better diagnosis and treatment of Fibromuscular Displasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community.
Patient Registry: In 2007, the Fibromuscular Dysplasia Society of America (FMDSA) began a data registry with the goal of increasing understanding of the disease and treatment. The specific goals of this registry are to identify patient characteristics associated with FMD, potential markers of the disease, and commonly used imaging and treatment modalities. Michigan Clinical Outcomes Research and Reporting Program is the coordinating center for the FMD Registry. The first patient was entered into the database in 2009. We currently have 15 registry centers constituting the largest FMD Registry in the world. Our goal is to continue enrolling patients and adding additional centers. 4 more centers have recently expressed interest and are up for consideration. The data from the registry helps us to learn more about FMD, how to treat the disease and drive research hopefully leading to a cure. In 2019, the International Consensus on Fibrmuscular Dysplaisia was published.
Annual Conference: FMDSA conferences are held to educate patients and medical professionals on the latest data being released. Attendance grows annually, attendees being: newly diagnosed patients, those who have had spontaneous coronary dissection (SCAD), caregivers and medical professionals interested in learning about FMD. In addition to learning more about FMD, the annual meeting provides an opportunity for patients to meet others also affected, this opportunity is one of the biggest draws to the meeting. We host a separate meeting with all of the investigators that are participating in the patient registry to go over updates, current and future research projects. The meeting has provided a platform for different research projects including blood draws, saliva collection and quality of life studies. There is no other meeting in the World where so many FMD patients have had the opportunity to participate in research. In 2019, we held our 12th Annual Meeting.
Patient SupportAs we spread awareness and see a drastic increase in the number of patients being diagnosed, patient support has become a large part of our responsibility as an organization. Due to the demand on our executive director and volunteers, we have continued to grow the Volunteer Support Network. This is a group of volunteers that have been identified in each state that can assist with local patients. Many have grown to the point of having regular local meetings. We continue to add FMD materials and videos to our website and Patient Toolbox. We have participated in many patient meetings throughout the United States and internationally. In 2019, we presented in Vancouver Canada, Warsaw Poland, Vanderbilt University, San Diego and more.
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 |
|---|
| Pamela Mace | Executive Director | 60 | $0 |
| Molly Clark | Director at Large | 2 | $0 |
| Christi Nelson | Director at Large | 1 | $0 |
| Cindy Basque | Treasurer | 8 | $0 |
| Lisa Foster | Director at Large | 2 | $0 |
| Maureen Womack | Secretary | 5 | $0 |
| Carol Rogers | Director-at-Large | 2 | $0 |
| Bradley Daar | President | 3 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202041559349301509_public.xml