About Us

Mission

The Fibromuscular Dysplasia Society of America (FMDSA) is a not-for-profit patient advocacy organization working towards better diagnosis and treatment of Fibromuscular Dysplasia (FMD). We do this by building awareness of FMD, funding research activities, providing support and educating patients and the health care community. FMDSA works to inspire and facilitate collaboration between national and international organizations devoted to FMD and FMD-related research, education, and patient care.

FMDSA

The Fibromuscular Dysplasia Society of America, Inc. was founded on March 11, 2003 and received tax exempt status on October 7, 2003. FMDSA is a Delaware nonprofit corporation which is classified by the IRS as exempt under IRC Section 501(c)(3) and as a “public charity” under IRC Section 509. Donations from individuals and corporations are tax deductible to the extent permitted by law.

FMDSA has become the recognized leader in the support of Fibromuscular Dysplasia (FMD) awareness, education and research. We will continue to achieve our goals by successfully raising money for the purpose of awarding FMD research grants, building awareness programs, and educating the public and medical communities about FMD.

We are a not-for-profit organization and programs like these cannot succeed without your support. Through volunteerism, membership, financial contributions, and event participation, the FMDSA can fulfill our vision and improve the quality of life of those affected by Fibromuscular Dysplasia.

Tax ID: 01-0771966

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Beadie Fun Fact

FMD was initially described in 1938 and classified according to angiographic and histopathological findings in the 1960's & 1970's

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The Tree as
Our Symbol

Since ancient times and across many cultures, the tree has long been a symbol of many things, including wisdom, protection, strength, inter-connectivity, and life itself. We’ve chosen the tree to represent the Fibromuscular Dysplasia Society of America for these reasons, and because the tree’s branches and roots signify the arteries affected by this disease. The tree’s branches, reaching upward and outward, provide protection and shelter, and represent our mission to help those who’ve been diagnosed with FMD. Trees, strengthened by their continuously spreading roots, symbolize how as we grow together we are stronger and more resilient. As with its growth from a delicate sapling to a giant robust tree, and as its branches and roots grow and spread, the tree symbol represents how we’ve evolved and continue to promote research, education and patient support throughout the years. Together we can achieve much, as we strive to reach for the sky.

“The creation of a thousand forests is in one acorn.”
-Ralph Waldo Emerson

* Please note that our web site does not include any form of advertisement and no external sources of funding, including sites funded by government agencies, pharmaceutical companies or other commercial entities.

Executive Director and Board of Directors

Pamela Mace, RN

Executive Director
FMD Patient
pam.mace@fmdsa.org

Dr. Bradley Daar

Rosie Miklavcic, RN

Sally Albrigo, B.S.N, RN, CCM

Director-at-Large
sally.albrigo@fmdsa.org

Rochelle DesRochers, B.A., B.Ed, M.Ed

Christi Eberhardt

Director-at-Large
christi.eberhardt@fmdsa.org

Lisa Foster, RN

Medical
Advisory Board

Jeffrey W. Olin, DO, FACP, FACC

Board Chairman

Professor of Medicine
Director, Vascular Medicine
Zena and Michael A. Wiener Cardiovascular Institute
Mount Sinai School of Medicine
New York, New York

Heather L. Gornik, MD

Co-Director

Vascular Center at the Harrington Heart and Vascular Institute
UH Cleveland Medical Center
Cleveland, Ohio

Kevin E. Meyers, MD

Pediatric Nephrologist Assistant Professor of Pediatrics

The Children’s Hospital of Philadelphia and University of Pennsylvania
Philadelphia, Pennsylvania

Warren D. Lo, MD

Associate Professor of Pediatrics,
Associate Professor of Neurology

Nationwide Children’s Hospital
Columbus, Ohio

Santhi K. Ganesh, MD

Assistant Professor of Medicine

Division of Cardiovascular Medicine, University of Michigan Health System

James C. Stanley, MD

Professor of Surgery
Handleman Research Professor of Vascular Surgery University of Michigan Health System

Alan H. Matsumoto, MD, FACR, FSIR

FAHA Chair and Theodore E. Keats Professor of Radiology

University of Virginia Health System

Michael R. Jaff, DO, FACC, FAH

Associate Professor of Medicine, Harvard Medical School Medical Director, Vascular Center-Vascular Diagnostic Laboratory-Vascular Ultrasound Core Laboratory

Bruce Gray, DO

Vascular Medicine

Greenville Hospital System. Greenville
South Carolina

Advisory Council

Kim A. Eagle, MD

Albion Walter Hewlett
Professor of Internal Medicine
Chief of Clinical
Cardiovascular Medicine
Director and Education Lead

Cardiovascular Center
Ann Arbor, Michigan

Robert D. Kubic, MBA

Chief Operating Officer

Honigman Miller Schwartz and Cohn LLP, Detroit, Michigan

James Baranski, CEO

National Stroke Association;
Member of various stroke-focused organizational advisory boards, including the Brain Attack Coalition, National
Forum for Heart Disease and Stroke and the World Stroke Association

Joan M. Legraw, RN, JD, MPH

General Counsel &
Consultant for Ethical &
Regulatory Affairs

Cape Cod Research Institute
Barnstable, Massachusetts

Kay Tanner, JD

Former FMDSA Board Member
Ethics Investigator, Global Ethics & Compliance Office

Dell Technologies

Eileen Grubba

Actress, writer and producer
Former US Ambassador for GE Healthcare’s Get Fit campaign in 2012

Spokesperson for LSI: Families with hereditary cancers, an Advocate for children with rare illnesses and for the inclusion of people with physical challenges in the entertainment industry

Annual
Reports

Our annual reports detail the accomplishments of FMDSA throughout the years, and summarize our financial results as reported in IRS Form 990.

Download the annual reports throughout the years
Download PDF

By-Laws

The FMDSA by-laws describe our purpose, structure and how we govern ourselves as an organization.
This document is available to the public.

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Corporate By-Laws
Amended February 2020

Beadie FMD Fun Fact:

For patients with suspected renal artery FMD, CTA is the initial imaging modality of choice Info Icon

Awards

The Founders Award is awarded to an individual or institution, who has taken extraordinary measures to advance awareness, research, or treatment of Fibromuscular Dysplasia.

We wish to express our sincere gratitude to our Founders Award recipients for their outstanding achievements in promoting research and awareness of Fibromuscular Dysplasia.

  • Pamela Mace, RN
  • Nazli McDonnell, MD, PhD - NIA
  • Jeffrey Olin, DO, FACP, FACC -
    Mt Sinai, New York

Cleveland Clinic Heart and Vascular Institute

  • Heather Gornik, MD
  • Jerry Bartholomew, MD, FSVM

University of Michigan

  • Kim A. Eagle, MD
  • James B. Froehlich, MD, MPH
  • Eva Kline-Rogers, RN, MS

Children's Hospital of Philadelphia

  • Kevin Meyers, MD
  • Susan Begelman, MD, FSVM
  • James Stanley, MD - University of Michigan
  • Santhi Ganesh, MD - University of Michigan

  • Jackie Saw, MD - Vancouver General Hospital, Canada

  • Pr Pierre-François Plouin - Hospital European G Pompidore, Paris France

FMDSA Lifetime Achievement Award

Pamela Mace, RN

  • Dr Nabilia Bouatia-Naji - Paris, France 
  • Dr Alexandre Persu - Belgium
  • Dr Xavier Jeunemaite - Paris France
  • Dr Jason Kovacic
  • Dr Andrzej and colleagues of the Institute of Cardiology in Poland

Past members that have served with distinction and made a significant contribution to FMDSA's success.

  • Susan and Rich GouldFounders
  • Marie YehFounder
  • Robert KubicVolunteer / Professional Advisory Council

Milestones Highlights

Please click to see larger images and more information.

Beadie FMD Fun Fact:

For patients with suspected renal artery FMD, CTA is the initial imaging modality of choice Info Icon