About Us
Mission
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
Beadie Fun Fact
FMD was initially described in 1938 and classified according to angiographic and histopathological findings in the 1960's & 1970's
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
Rochelle DesRochers, B.A., B.Ed, M.Ed
Director-at-Large
rochelle.desrochers@fmdsa.org
Rochelle DesRochers
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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
Vascular Center at the Harrington Heart and Vascular Institute
UH Cleveland Medical Center
Cleveland, Ohio
Kevin E. Meyers, MD
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
Division of Cardiovascular Medicine, University of Michigan Health System
James C. Stanley, MD
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
Bruce Gray, DO
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.
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.
Beadie FMD Fun Fact:
For patients with suspected renal artery FMD, CTA is the initial imaging modality of choice
Milestones Highlights
Please click to see larger images and more information.
2003 FMDSA MILESTONES
FMDSA is Incorporated, March 11, 2003, and gains Public Charity status, October 2003. Our founders: Rich and Susan Gould and Marie Yeh.
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2004 FMDSA MILESTONES
First Medical Advisory Board: Susan Begelman MD, Jeffrey Olin DO
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2005 FMDSA MILESTONES
Accepted as Associate Member of NORD (The National Organization of Rare Diseases)
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2006 FMDSA MILESTONES
FMDSA Spreads Awareness, stories in several major medical publications help to educate.
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2007 FMDSA MILESTONES
The FMD Registry is officially created with partnership from the University of Michigan.
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2010 FMDSA MILESTONES
Dr Olin Reach MD interview, professor of cardiology and director of vascular medicine at Mount Sinai Hospital.
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2012 FMDSA MILESTONES
The United States Patient Registry for FMD: “Results in the first 447 patients”
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2013 FMDSA MILESTONES
FMDSA named an official charity of the Union Home Mortgage Cleveland Marathon.
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2014 ( 1st ) FMDSA MILESTONES
1st International Fibromuscular Dysplasia Research Network Symposium - May, 2014
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2016 FMDSA MILESTONES
House Bill 434 passes in Ohio, designating May as Fibromuscular Dysplasia Awareness Month
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2017 FMDSA MILESTONES ( 2nd )
The 2nd International FMD Research Network and SCAD Symposium - May 2017, Cleveland.
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2018 FMDSA MILESTONES
1st Belgian International Meeting on Fibromuscular Dysplasia (2015 was National, this year was International)
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2019 FMDSA MILESTONES
First International Consensus on the Diagnosis and Management of Fibromuscular Dysplasia - January, 2019
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2020 FMDSA MILESTONES
FMDSA is honored to be the recipient of the Global Gene’s “Champion of Hope” Award
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2021 FMDSA MILESTONES
The United States Registry for Fibromuscular Dysplasia exceeds 3,100 patients
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Please see our annual reports for the Milestones from 2022 onwards:
https://www.fmdsa.org/about-us/?tab=AnnualReportsBy-Laws
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
- Dr. Esther Kim, Atrium Health North Carolina
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
Beadie FMD Fun Fact:
For patients with suspected renal artery FMD, CTA is the initial imaging modality of choice
