Leadership

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

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

Juan Bowen, MD
Mayo Clinic, Rochester

Alan C. Braverman, MD
Washington University School of Medicine

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

Duke Cameron, MD
Johns Hopkins University School of Medicine

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

Melissa Flint, PsyD, FT, CCTP
Midwestern University

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

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

Ronald V. Lacro, MD
Boston Children’s Hospital

David Liang, MD, PhD
Stanford University School of Medicine

Mark Lindsay, MD, PhD
Massachusetts General Hospital

Bart Loeys, MD, PhD
University of Antwerp

Gretchen MacCarrick, MS CGC
Johns Hopkins University School of Medicine

S. Chris Malaisre, MD
Northwestern Medicine

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

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
Ryan Rodarmer, MS
rrodarmer@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 comprising a group of core VEDS community thought leaders that meets regularly to give feedback on developing programs and initiatives for The VEDS Movement.

Dominick Corso – Steering Committee Chair
Dominick Corso has been involved in the VEDS community ever since his own emergency event and VEDS diagnosis in 2019. Dominick firmly believes that he would not have been able to recover and adjust to the VEDS life without the support of this very community. He is an advocate for the power of sharing stories and listening to others, and he believes anyone can volunteer and make a difference by doing so. He is now determined to help by strengthening our collective voice, raising awareness, and bringing the community to those who need it.

Kristi Posival – Steering Committee Vice-Chair
Kristi Posival is a professional artist residing in Baltimore, MD. She was diagnosed with VEDS at age 5 (in 1979) and recently turned 50. Posival believes the work of the Foundation is paramount for future generations and is proud to foster The VEDS Movement. Hobbies include gardening, traveling, and a mindful way of living.

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 was diagnosed with VEDS 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.

Katy DeCoursey
Katy DeCoursey is a transformational leader with 20+ years of experience in transformation, strategy, and marketing. She holds a Bachelor’s in Industrial and Systems Engineering from Georgia Tech and an MBA from UNC Chapel Hill. Katy is passionate about improving hope, outcomes, and quality of life for the VEDS community and has founded a VEDS prayer ministry, VEDS Bible study, co-founded a family foundation (Walk with DeCo) to support VEDS research and co-written a children’s book about VEDS with her son.

Sofia De la Garza
Sofia De la Garza is the mother of Sofia María, who is affected by Vascular Ehlers-Danlos Syndrome (VEDS). Sofia believes with all her heart that one day, there will be a treatment or a cure for VEDS patients. She is incredibly proud to be a part of the Steering Committee and even prouder to be the mother of Sofia María. She is ready to advocate and work hard for the lives of all people living with this condition.

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.

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 runs marathons in a VEDS shirt to raise awareness and funds for The VEDS Movement. She has educated first responders on how to handle VEDS patients in emergency situations and assisted in creating the first responders reference guide. She has helped lead Team VEDS in Walk for Victory over the years and assists new community members in the social media world to find resources and support. Her goal is for VEDS to become a widely known condition by both medical professionals and the general public and for the community and her son to have a chance at a treatment or cure.

Ben Kemena
Ben is a sixty-something guy living with VEDS. He also has a younger sibling with VEDS. Ben is a retired hospital-based internal medicine physician. He is a longtime Colorado resident and outdoor seeker and lives with his spouse in Denver.

AshleyRose Koengeter (Marisch)
AshleyRose 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) – AshleyRose, 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, AshleyRose decided to become even more involved with The VEDS Movement. AshleyRose’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.

Karen MountainJohnson
Karen was diagnosed with VEDS in 2018 after a complicated recovery from an orthopedic injury. After researching the condition, she recognized a lifetime of seemingly disconnected symptoms and experiences and began the journey of seeking referrals, testing, and ultimately, diagnosis. Following her diagnosis, both of her young children were also confirmed to have the condition. Karen recognizes the profound emotional toll of the condition on patients, caregivers and families. She has been involved with the VEDS community since her diagnosis, presenting on topics surrounding mental health and wellness. Karen is a Mental Health Professional and Clinical Supervisor with a private practice in Saint Paul, MN.

Rosemarie “Roe” Nania
Roe Nania’s brother, Angelo, passed away in June 2019 at the age of 49 due to an aortic dissection caused by complications related to VEDS. Since his passing, the family has come to learn that four other family members also have VEDS. While looking for ways to cope with her loss, Roe came across The VEDS Movement and realized The VEDS Movement was a family she wanted to be a part of. Roe has thrown herself into fundraising, and her family hosts a yearly Comedy Fundraising Event. In 2023, Roe and her family founded BELOvEDS, A Nania Foundation Inc. to further their advocacy initiatives; in 2024, BELOvEDS launched its first scholarship fund for college students who have a parent or guardian with VEDS as a way of giving back to the VEDS community. Rosemarie currently works in finance at a major media company in New York and is also a Usui Reiki Master Practitioner. She serves on the Steering Committee for The VEDS Movement and devotes as much time as she can to the continued work of BELOvEDS and other patient advocacy initiatives.

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 Vowles is the president of Adventuresinlove4Andie, a small non-profit in memory of her daughter Andie Mae, who passed away from complications of VEDS at age 20. Maria helps raise awareness for VEDS and fundraises to fund projects through the VEDS Movement and higher education scholarships in honor of Andie. Maria is a high school Biology and Forensics teacher with a M.S. in Biochemistry and Education. She is also a NYS Master Teacher in the Finger Lakes Region. Maria enjoys spending time with her husband and two other children.

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.