Pam Mace, Patient Advocate

After suffering a stroke and dissecting three of the four arteries that supply blood flow to her brain, Pam Mace was diagnosed with Fibromuscular Dysplasia (FMD). There was no patient organization at the time, and Pam quickly learned there was a lack of knowledge and understanding of FMD. She applied her nursing knowledge and skills to raise awareness of FMD and to promote education. FMDSA was incorporated in 2003, and after volunteering with the organization for six years, she gave up her clinical nursing career to serve as the Executive Director of FMDSA. Pam successfully led the campaign to get FMD recognized as a rare disease, cause of stroke and aneurysms. Pam is personally responsible for bringing FMD experts around the world together and for helping to facilitate and support patient groups worldwide. In addition, Pam serves on the Steering and Publications Committees for the United States Registry for Fibromuscular Dysplasia. Pam has more than 20 years of experience working as a registered nurse, primarily in the emergency and trauma departments. She also has experience working in the Cath Lab, on a Critical Care Transport Team and in the Intensive and Coronary Care Units. Working with her advisory boards, Pam and her team transformed FMDSA from a "kitchen table" organization to the highly respected, global organization that it is today. They have built a network of volunteers, physicians, researchers, and rare disease resources worldwide. For the last 14 years, she has planned and coordinated the FMDSA annual meetings, which has included working with researchers to facilitate saliva collections, blood draws, and quality of life studies to further the research of FMD.