VEDS MOVEMENT - Key Persons
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
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.
Job Titles:
- Chairman of the Scientific Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Scientific Advisory Board
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.
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Scientific Advisory Board
Job Titles:
- Member of the Professional Advisory Board
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.
Job Titles:
- Member of the Professional Advisory Board
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.
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
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.
Job Titles:
- Chairman of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
- New York - Presbyterian Hospital
Job Titles:
- Member of the Scientific Advisory Board
Job Titles:
- Member of the Scientific Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Chief Science Officer of the Marfan Foundation
Job Titles:
- Member of the Professional Advisory Board
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.
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.
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- President of a Small Non - Profit Organization, Adventuresinlove4Andie
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.
Job Titles:
- Member of the Professional Advisory Board
- Massachusetts General Hospital
Job Titles:
- Member of the Professional Advisory Board
- New York - Presbyterian Hospital
Job Titles:
- Member of the Professional Advisory Board
- PAB Advisor
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.
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- President & CEO of the Marfan Foundation
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.
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
- Member of the Scientific Advisory Board
- University of Washington
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Professional Advisory Board
- New York - Presbyterian Hospital
Job Titles:
- Member of the Professional Advisory Board
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.
Job Titles:
- Member of the Professional Advisory Board
Job Titles:
- Member of the Scientific Advisory Board
- Baylor College of Medicine
Job Titles:
- Member of the Professional Advisory Board
- Texas Children 's Hospital
Job Titles:
- Member of the Scientific Advisory Board
- Cleveland Clinic, Lerner Research Institute
Job Titles:
- Member of the Professional Advisory Board