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

B. Timothy Baxter, MD
University of Nebraska

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

John A. Elefteriades, MD
Yale School of Medicine

Jil C. Tardiff, MD, PhD
University of Arizona

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.

Abby DeLong
Abby became involved with the VEDS community in 2014 when her two-year-old son was diagnosed with the condition. She quickly realized there is a severe lack of knowledge in the medical community about the condition. Her top priorities are advocating for patient care with proper treatment and prevention.

Rachel Tays
Rachel is a caregiver to her husband and two young boys who have VEDS. She is a patient advocate to families new to VEDS and in crisis, and loves helping families find help and support in the VEDS community.

Jeremias Tays
Jeremias was diagnosed with VEDS in 2014, and is also the father of two boys with VEDS. He has a passion for the community and goal of trying to help other fathers with VEDS.

Sarah Jeffs
Sarah has a Bachelor’s degree in Biology from the University of Georgia and has worked as a lab technician in molecular biology labs including the USDA, University of Georgia, CDC, and the University of Utah. She has a child who was diagnosed with VEDS at the age of two. Since his diagnosis, she has been active in the VEDS Collaborative and VEDS community online providing support to families who are newly diagnosed, or seeking diagnosis.

Frances Marin
Frances has been a part of the VEDS community since her daughter was diagnosed in 2004 at age 10. After getting the VEDS diagnosis, she went on a mission to educate herself by attending yearly conferences, immediately forming a bond with VEDS families that she has met throughout the years. She’s been her daughter’s advocate in making sure she receives proper treatment, educating her team of specialists about VEDS, and raising awareness among other medical professionals.

Ashley Rose 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.

Aaron Sander
Aaron Sander is an A&R Music Executive based in Los Angeles, California that was diagnosed with VEDS in 2017 after his father passed away from the disorder. Other members of his family have since been diagnosed and after having complications due to the condition himself, he decided to get more involved in the VEDS community in order to help others with their journey as well as furthering research.

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.

Cathy Bowen, Member Emeritus
Cathy has been an Ehlers-Danlos Syndrome (EDS) advocate since 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 believes that everyone deserves a correct diagnosis so they can make informed decisions and receive proper treatment from knowledgeable, skilled physicians. It is her life-long mission to increase VEDS awareness and education, and to help other families in David’s memory. Over the last 23 years, Cathy has worked with numerous EDS organizations and is the Co-Founder/Executive Director of EDS Today.

The VEDS Community Group is a larger advisory group to The VEDS Movement comprised of community members affected by VEDS who either have VEDS themselves, or have family members who are affected. The VEDS Movement reaches out to members of this group as needed for project development and input on direction.