The VEDS Movement is directed by Katie Wright, a leading patient advocate in the VEDS community who lives with VEDS, and Josephine Grima, PhD, the chief scientific officer of The Marfan Foundation. The Movement is guided by two teams of volunteer leaders, the VEDS Steering Committee, and the VEDS Community Group. In addition to this support, The VEDS Movement has the support of the entire Marfan Foundation staff, and Professional Advisory Board and Scientific Advisory Boards.
Our Professional Advisory Board is comprised of experts in the field of Marfan syndrome, VEDS, and related conditions who provide us with professional expertise and oversight of all medical information on the diagnosis and management of VEDS, Marfan syndrome, and related conditions. In addition, they advise us on research opportunities and priorities. Our Scientific Advisory Board is comprised of experts in the field of medical and scientific research. Its purpose is to evaluate and critique the proposals received through the research grant program.
Professional Advisory Board
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
Northwell Orthopaedic Institute at Huntington
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
NewYork-Presbyterian Hospital
Weill Cornell Medical Center
Richard B. Devereux, MD
NewYork-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
NewYork-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
Gretchen MacCarrick, MS CGC
Johns Hopkins University School of Medicine
S. Chris Malaisre, MD
Northwestern University, Feinberg School of Medicine
Bluhm Cardiovascular Institute, Northwestern Memorial Hospital
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
NewYork-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 Washingtoon School of Medicine
Paul D. Sponseller, MD
Johns Hopkins University
School of Medicine
Luciana Young, MD
Seattle Children’s Hospital
Vincent L. Gott, MD (Member Emeritus)
Johns Hopkins Hospital
Maya Brown-Zimmerman
PAB Advisor
Scientific Advisory Board
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
Staff
Director of VEDS (Vascular Ehlers-Danlos Syndrome) Division
Katie Wright
kwright@TheVEDSMovement.org
President & CEO
Michael Weamer (x150)
mweamer@marfan.org
COO/CFO
Judy Gibaldi (x114)
jgibaldi@marfan.org
Chief Science Officer
Josephine Grima, PhD (x117)
jgrima@marfan.org
Chief Development Officer
Helaine Baruch (x141)
hbaruch@marfan.org
Chief Program Officer
Eileen Masciale (x161)
emasciale@marfan.org
Senior Director of Patient & Program Services
Susan Leshen, LCSW (x122)
sleshen@marfan.org
Director of Finance & HR
Inderjeet Kaur (x121)
ikaur@marfan.org
Director of Help & Resource Center
Janice Petrella Lynch, MSN, RN (x126)
jlynch@marfan.org
Director of National Philanthropy
Megan Martin (x160)
mmartin@marfan.org
Senior Vice President, Development
Deborah Goodman (x154)
dgoodman@marfan.org
Senior Vice President, Walk for Victory Program
Kimberly Huddleston (x132)
khuddleston@marfan.org
Director of Volunteer Engagement
Suśan Sobers (x116)
ssobers@marfan.org
Director of Technology Solutions
Kelly Kopish
kkopish@marfan.org
Marketing and PR Manager
Angela Crist (x162)
acrist@marfan.org
Walk for Victory Manager
Kara Burke
kburke@marfan.org
Data Entry and
Administrative Manager
Julie Perlin (x120)
jperlin@marfan.org
Social Events Manager
Alyssa Aiello (x111)
aaiello@marfan.org
Accountant
Lesley Harris (x140)
lharris@marfan.org
Program Manager
Bruno DaSilva (x143)
bdasilva@marfan.org
Production Specialist
Dominga Noe (x137)
dnoe@marfan.org
Accounting & Administrative Clerk
Joann Saccone (x125)
jsaccone@marfan.org
Data Entry Clerk
Margaret Helstowski (x144)
mhelstowski@marfan.org
Operations Assistant
Jasmine Llanos (x123)
jllanos@marfan.org
Development Assistant
Kristin Braun
kbraun@marfan.org
VEDS Steering Committee
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.
Isabella Marin
Isabella was diagnosed with VEDS in 2004. She is the only person in her family with VEDS. After many years of struggling to educate doctors on VEDS and raise awareness, she has devoted her life to becoming a VEDS advocate. She is a registered nurse and holds two bachelor’s degrees in psychology and nursing. Her lifelong goal is to use her own patient experiences and education background to help those diagnosed with VEDS become their own advocates and help improve quality of life.
Cathy Bowen
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.
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.
VEDS Community Group
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.
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