Leadership

Heidi M. Connolly, MD, FACC (Chair)
Mayo Clinic, Rochester

Juan Bowen, MD
Mayo Clinic, Rochester

Alan C. Braverman, MD
Washington University School of Medicine

Adam Bitterman, DO
Zucker School of Medicine at Hofstra/Northwell

Peter H. Byers, MD
University of Washington School of Medicine

Duke Cameron, MD
Massachusetts General Hospital

Joseph S. Coselli, MD
Baylor College of Medicine and
St. Luke’s Episcopal Hospital

Jessica G. Davis, MD
New York-Presbyterian Hospital
Weill Cornell Medical Center

Richard B. Devereux, MD
New York-Presbyterian Hospital
Weill Cornell Medical Center

Hal Dietz, MD
Johns Hopkins University School of Medicine

Sylvia A. Frazier-Bowers, DDS, PhD
University of North Carolina at Chapel Hill

Leonard N. Girardi, MD
New York-Presbyterian Hospital
Weill Cornell Medical Center

Ronald V. Lacro, MD
Boston Children’s Hospital

David Liang, MD, PhD
Stanford University School of Medicine

Rachel W. Kuchtey, M.D., PH.D.,
Vanderbilt University Medical Center

Irene H. Maumenee, MD
NewYork-Presbyterian Hospital
Columbia University Medical Center

Mark Lindsay, MD, PhD
Massachusetts General Hospital

Gretchen MacCarrick, MS CGC
Johns Hopkins University School of Medicine

S. Chris Malaisre, MD
Northwestern Medicine

Dianna Milewicz, MD, PhD
University of Texas Medical School at Houston

D. Craig Miller, MD
Stanford University School of Medicine

Shaine Morris, M.D.
Texas Children’s Hospital

Enid R. Neptune, MD
Johns Hopkins University
School of Medicine

Reed E. Pyeritz, MD, PhD
University of Pennsylvania Perelman
School of Medicine

Mary J. Roman, MD
New York-Presbyterian Hospital-
Weill Cornell Medical Center

Melissa Russo, MD
Brown University

Lynn Y. Sakai, PhD
Shriners Hospital and Oregon
Health & Science University

Sherene Shalhub, M.D., MPH,
University of Washington School of Medicine

Paul D. Sponseller, MD
Johns Hopkins University
School of Medicine

Luciana Young, MD
Seattle Children’s Hospital

Maya Brown-Zimmerman
PAB Advisor

Craig T. Basson, MD, PhD (Chair)
Novartis Institutes for Biomedical Research

Scott A. LeMaire, MD
Baylor College of Medicine

Jonathan W. Weinsaft, MD
New York-Presbyterian Hospital-
Weill Cornell Medical Center

Peter H. Byers, MD
University of Washington

Jil C. Tardiff, MD, PhD
University of Arizona

David W. Dempster, PhD
Columbia University, New York

Daniel Rifkin, PhD
NYU Grossman School of Medicine

Suneel Apte, MBBS, DPhil
Cleveland Clinic, Lerner Research Institute

Director of The VEDS Movement
Katie Wright
kwright@TheVEDSMovement.org

President & CEO of The Marfan Foundation
Michael Weamer (x150)
mweamer@marfan.org

Chief Science Officer of The Marfan Foundation
Josephine Grima, PhD (x117)
jgrima@marfan.org

The VEDS Steering Committee is a small advisory group comprised of a group of core VEDS community thought leaders that meets regularly to give feedback on the development of programs and initiatives for The VEDS Movement.

Ashley Rose Koengeter (Marisch)
Ashley Rose and her family have been attending conferences and raising funds for awareness and a cure since 2011 when she almost lost her mother to a ruptured aneurysm. After first being diagnosed with FMD (fibromuscular dysplasia) – Ashley Rose, her mother Dawn and older sister Allyson were officially diagnosed with VEDS in 2017 and joined The VEDS Movement in 2019. After tragically losing her older sister Allyson at the age of 34 to an aortic dissection caused by VEDS, Ashley Rose decided to become even more involved with The VEDS Movement. Ashley Rose’s passion is to live out her sister’s legacy – to live life to its fullest and “Throw all the good you can out into the world and see what comes back” (Allyson Jane 2021). She wants to spread this message and do all that she can to be involved in the VEDS community by sharing love, raising awareness, and raising funds to find a cure for VEDS in her lifetime.

Meg Boeglin
Meg was diagnosed with VEDS in 2016 after many years of misdiagnosis. Subsequently, she learned that both her daughter and son also have VEDS. Meg, who is a registered nurse at Hoag Hospital in Newport Beach, CA, works directly with patients and the leading experts in genetic connective tissue conditions. The VEDS community has been pivotal in her own education and coping with this awful condition, so she is driven to give back to the community in any way she can. Her goal is to contribute to improving the quality of life and ultimately establish evidence-based standards of care.

Emma Borreggine
Emma Borreggine is an individual with VEDS who was diagnosed in 2014 after tragically losing five members of her family to the disorder. After receiving her diagnosis and realizing just how little research was being done on VEDS, she and her husband, Justin, decided to start raising money to support the research community. Their efforts developed into the DEFY Foundation, which was officially established as a 501(c)3 nonprofit organization in 2015. Emma currently works in pharmaceuticals, but outside of this, devotes as much time as she can to the continued work of DEFY and other patient advocacy initiatives.

Kristi Posival
Kristi Posival was diagnosed with VEDS in 1979, at five years of age. Her father had passed a few months earlier and was diagnosed during his autopsy. He was 31 years old. Growing up in the 1980s, there was no information available and no chance of meeting anyone else with this condition. During her childhood and college career, Posival focused on art and other creative endeavors. Today, she is a professional painter and teaches drawing to children. At 46, Kristi still has a positive outlook. Even though she feels a cure in her lifetime is a long shot, she continues to fight for awareness in order to create better outcomes for future generations.

Daniel Sperry
Daniel was diagnosed with VEDS at age 39 after having an emergency abdominal aortic aneurysm in 2019. His son DJ was diagnosed shortly after. Daniel’s main focus now is spreading awareness so that more people can learn about VEDS and more research can be done. Daniel has not let his diagnosis hold him back and will continue to spread awareness when and where he can.

Maria Vowles
Maria is president of a small non-profit organization, Adventuresinlove4Andie, created in memory of her daughter, Andie, who passed away from her first VEDS complication in 2019. Better medical care and a more knowledgeable staff could have saved her life. Maria is passionate about VEDS advocacy and is excited to be part of this group. She has a BS in Biology, MS in Math, Science, Technology Education and MS in Biochemistry. She has been a biology and chemistry teacher at the high school and college levels since 2004.

Morgan Jozwiak
Morgan has been involved in the VEDS community since her son’s diagnosis in 2019 at 10 years old. Her son’s father passed at 21 from what they now know was VEDS in 2011. Morgan races running events in a VEDS shirt to raise awareness and funds for The VEDS Movement. She also educates first responders on how to handle VEDS patients in emergency situations. Her goal is for VEDS to become a widely known condition by both medical professionals at all levels and the general public and for the community and her son to have a chance at a cure.

Katy DeCoursey

Rosemarie “Roe” Nania
In the fall of 2017 Rosemarie (Roe) was introduced to the words Vascular Elhers Danlos. Her brother Angelo, had a life-threatening event while at work one day. He collapsed and was rushed to the hospital. In the next few months, he had several surgeries and numerous tests. Late 2017 Angelo was diagnosed with VEDS, and unfortunately, passed away in June 2019 at the age of 49 due to an Aortic dissection caused by VEDS. Since Angelo’s death, another brother and three nieces have confirmed VEDS diagnoses. Additionally, Roe’s own father passed away suddenly and mysteriously in 1995 at the age of 51 from what they now assume was VEDS, as it now all fits. Angelo’s death may have brought to light Roe’s reason for putting so much effort into raising funds for organizations like The VEDS Movement, but her three nieces are her passion and drive behind why Roe dedicates so much time and energy to the cause in the hopes of someday soon to see a successful treatment for all VEDS patients. In 2022 Roe and her family hosted their first Fundraiser in support of the VEDS Movement and pray to continue that type of event yearly.

Heidi Green
Heidi Green is a mother of 10 year old twins, one of which was diagnosed with VEDS. She has a passion for helping others and is currently in her final semester of nursing school.

Dominick Corso

Cathy Bowen, Member Emeritus
Cathy became an Ehlers-Danlos Syndrome (EDS) advocate after her 14-year-old son David’s tragic death in 1996. His VEDS diagnosis three days before his death came too late to help save his life. Cathy believed that everyone deserves a correct diagnosis so they can make informed decisions and receive proper treatment from knowledgeable, skilled physicians. It was her life-long mission to increase VEDS awareness and education, and to help other families in David’s memory. For 25 years, Cathy worked with numerous EDS organizations and was the Co-Founder/Executive Director of EDS Today. Cathy passed away in May 2022 and her legacy in VEDS advocacy will always be remembered.