Knowledge is power. We want to make it as easy as possible for you to access information from our world-renowned Professional Advisory Board and other leading medical experts on VEDS. The Charging Forward: Virtual Medical Symposium Series is a series of Vascular Ehlers-Danlos Syndrome webinars that will arm you with the latest diagnosis and treatment information about Vascular Ehlers-Danlos Syndrome from experts. We hope this knowledge will empower you to advocate for yourself or your family members with your doctors, schools, employers, and more.
The Empowerment Series is a webinar program to help people in the Vascular Ehlers-Danlos Syndrome (VEDS), Marfan, and related conditions community improve their quality of life. The topics covered in this series are selected based on the needs expressed by community members. These include pain, depression, insurance problems, inability to work, financial instability, chronic bone/joint/eye problems, and a whole host of problems that lie outside the specific medical issues that are associated with VEDS and other related conditions.
The webinars are usually one hour long and feature a PowerPoint presentation followed by ample time to ask questions. You can access them on your desktop, laptop, smartphone, tablet, or other devices to watch the presentation. Alternatively, you can simply dial in by phone and listen. Once you register for each webinar, you will receive a personal link to log on. If you are unable to listen live, all recordings will be available on this website following the presentation.
Also included here are recorded VEDS webinars from The Marfan Foundation’s International E3 Summit in 2020.
Upcoming Vascular Ehlers-Danlos Syndrome webinars will be posted here as they are announced. Check this page for updates, or sign up for updates.
Upcoming Webinars:
Previous Webinars:
An Introduction to The VEDS Movement
March 2, 2023
Presenter: Katie Wright, Dr. Josephine Grima, The VEDS Movement
Recording not currently available
New Aortic Disease Management Guidelines: What do they mean for you?
December 1, 2022
Learn about the new ACC/AHA guidelines for the management and treatment of aortic disease and what the new guidelines mean for people with genetic aortic and vascular conditions. The featured speakers are all members of the ACC/AHA writing committee: Dr. Alan Braverman, cardiologist, Washington University School of Medicine in St. Louis; Dr. Abe DeAnda, cardiothoracic surgeon, University of Texas Medical Branch (UTMB) in Galveston; and Maya Brown-Zimmerman, patient advocate.
Physical activity research
November 9, 2022
Features highlights from the many studies presented at Science in Paris (August 2022). Presenters: Dr. Alan Braverman, Washington University in St. Louis, and Dr. Siddarth Prakash, UT Health.
Family Planning and Pregnancy for Genetic Aortic Conditions
September 28, 2022, 1 pm Eastern
A webinar on family planning and pregnancy, brought to you by the GenTAC Alliance Patient, Families, and Clinicians Education Working Group. Medical experts from the US and Europe will present the options for family planning and pregnancy when you have a connective tissue condition and the different recommendations in the US and EU.
Living with an Ostomy and VEDS: Personal Perspectives
April 26, 2022
This webinar featured a short medical presentation with Dr. Victor Chedid and Dr. Iris Wang, Mayo Clinic, on bowel perforations and ostomies with VEDS, followed by a Q&A with community members Aaron Sander, Darine Abboud, and Heather Dixon about their experiences living with an ostomy.
Diagnosis 2.0: Reprocessing Your Diagnosis as an Adult
March 29, 2022
When a child receives a connective tissue condition diagnosis, the depth and complexity of that diagnosis mostly falls to the child’s caregivers. Most children cannot yet fully grasp the full meaning of their diagnosis and living with the condition is simply a normal part of their life.
However, when the child grows up with a connective tissue condition, young adulthood ushers in a new personal understanding of their diagnosis. With greater levels of understanding both of themselves and the diagnosis, this is a time of re-processing the diagnosis from a new, more adult lens.
This webinar looks at what that re-processing can look like and how young adults in the Marfan, Loeys-Dietz, and VEDS communities have experienced it themselves.
Transitioning to Adult Care
March 16, 2022
This webinar featured three leading experts from Cleveland Clinic: Dr. Eric Roselli, Dr. Ken Zahka, and Dr. VIdyasagar Kalahasti, for a presentation and discussion about transitioning from pediatric to adult care with Marfan, Loeys-Dietz, VEDS, and related conditions.
Living with Risk
January 24, 2022
The GenTAC Alliance presented a webinar on Living with Risk, featuring Dr. Juan Bowen, Mayo Clinic, Dr. Glen Iannucci, Children’s Healthcare of Atlanta, and Karen MountainJohnson, a licensed professional clinical counselor at CARE Counseling in Minneapolis. They discuss the medical aspects of living with risk from both the adult and pediatric point-of-view.
Beyond The Selfie: Body Image and Life with a Connective Tissue Condition
November 11, 2021 at 7pm Eastern
From long, flexible limbs to visible veins and surgery scars, living with the physical markers of Marfan, Loeys-Dietz, VEDS, and related conditions can weigh on a person’s body image. This 90-minute personal perspectives webinar is led by Dr. Brad MacNeil, a licensed clinical psychologist and assistant professor at Midwestern University in Glendale, Arizona. Panelists Kendra DiPinto (Marfan), Adriana Rivera (Marfan), Mariah Wessel-Draper (VEDS) and Brandon Crawford (LDS) share their thoughts and experience with body image and living with Marfan, Loeys-Dietz, and VEDS.
This discussion focuses on body image questions relating to Marfan, VEDS and Loeys-Dietz but can apply to many conditions presenting with external features.
Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine
November 4, 2021
Understanding Clinical Trials
October 26, 2021
Presented by Dr. Hal Dietz, Dr. Shaine Morris, Dr. Peter Byers, and Dr. Xavier Jeunemaitre.
Dr. Dietz, Dr. Morris, Dr. Byers, and Dr. Jeunemaitre are on the Scientific Advisory Board (SAB) for the PREVEnt trial by Aytu BioPharma
Life Insurance When You Have Marfan, LDS, or VEDS: Your Questions Answered
October 13, 2021 at 7pm Eastern
Brian Bushwell, from the Strategic Wealth Advisory Group, provides an overview of life insurance, reviews the types of policies, and addresses the issues that concern people with Marfan, LDS, and VEDS.
Personal Perspectives: Physical Activity and Exercise
September 9, 2021 at 7pm Eastern
Presented by Dr. Alan Braverman, Washington University School of Medicine, Dr. Mary Sheppard, University of Kentucky, and a panel of community members representing the Marfan, Loeys-Dietz, and VEDS community who discussed physical activity and exercise, and addressed questions from attendees.
Making Meaning of Grief: A Personal Perspectives Panel
June 15, 2021, 7 pm Eastern
Presented by Melissa Flint, Psy.D., FT, CCTP, and a panel of community members discussing clinical and lived experiences to help define and make meaning of grief, survivor guilt, and other feelings that surface when we lose someone with Marfan, LDS, VEDS, or a related condition.
Advances in the Treatment of Aortic Dissection
May 2021
Dr. Marc Moon and Dr. Westley Ohman, Washington University School of Medicine
*This webinar is a presentation from the GenTAC Alliance, a division of The Marfan Foundation
VEDS Research Update
May 3, 2021, 7 pm Eastern
Dr. Sherene Shalhub, Dr. Shaine Morris, Dr. Peter Byers, Dr. Hal Dietz, and Dr. Tony Yasick
Aortic Imaging: Your Questions Answered
April 14, 2021, 7 pm Eastern
Dr. Venkat Polsani, Piedmont Heart
Personal Perspectives Panel: Dads with Marfan/LDS/VEDS
March 31, 2021
Creating a Care Team for VEDS
March 25, 2021, 7 pm Eastern
Dr. Peter Byers, University of Washington
Maximize Your Doctor Visits: Personal Perspective Panel
January 28, 2021
Presented by members of the Marfan, LDS, and VEDS communities with medical professional advice from Gretchen MacCarrick, MS, CGC.
Gut Wrenching! LDS & VEDS Colon/GI issues
August 29, 2020
Dr. Xiao Jing (Iris) Wang and Dr. Michael Camilleri, Mayo Clinic
ABCs of VEDS
August 27, 2020
Dr. Shaine Morris, Texas Children’s Hospital
Dr. Xavier Jeunemaitre, University of Paris
The Art of VEDS Vascular Surgery
August 2020
Dr. Sherene Shalhub, University of Washington
Dr. James Black, Johns Hopkins University
Viewing your VEDS Arterial Tree
September 1, 2020
Dr. Heidi Connolly, Mayo Clinic
Dr. Richard Devereux, Weill Cornell Medicine
Management of VEDS in Children
September 9, 2020
Dr. Bart Loeys, University of Antwerp, Belgium
Preimplantation Genetics Diagnosis and Pregnancy
September 2020
Dr. Leema Robert, Guy’s and St. Thomas’ Hospital, London
Can I Do This? Your Exercise Questions Answered (VEDS, Marfan, LDS)
September 12, 2020
Dr. Siddharth Prakash, UT Health Science Center at Houston
Dr. Alan Braverman, Washington University School of Medicine
Breathe Easy- Marfan/LDS/VEDS
September 8, 2020
Dr. Enid Neptune, Johns Hopkins University
What’s in Your VEDS Family Tree? Genetics, Variability, Outcomes
E3 Summit, 2020
Dr. Peter Byers, University of Washington
Genetics of VEDS
September 1, 2020
Dr. Ingrid Van De Laar, Erasmus MC
Gastrointestinal Surgery for VEDS
E3 Summit, 2020
Dr. Gina Adrales, Johns Hopkins University
Surveillance, Management, and Medical Treatment of VEDS
September 2020
Dr. Michael Frank, Paris, France
COL1A1 Mutations
Dr. Fransiska Malfait, Ghent University Hospital
Headaches and Migraines: Your Questions Answered
Dr. Addie Peretz, Stanford Healthcare
Genetics and VEDS
Hal Dietz, MD, Johns Hopkins University
Lung Health and VEDS
Enid Neptune, MD, Johns Hopkins University
Pregnancy and Women’s Health in VEDS
Melissa Russo, MD, Brown University
Management of Dissections and Aneurysms in VEDS
Sherene Shalhub, MD, University of Washington
Children’s Heart Issues in Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos Syndromes
Ron Lacro, MD, Boston Children’s Hospital
Vascular Ehlers-Danlos: An Overview
Sherene Shalhub, MD, University of Washington
Shaine Morris, MD, Texas Children’s Hospital
Medical Insurance and Disability
Presented by Jonathan Rodis, patient advocate, and Kathleen Kane, Esq.
Bullying: Tools and Mindset
Presented by Denis Estimon, Director, Be Strong
Building Resilience
Presented by Karen Mountain Johnson, MA, LPCC
Coping with Medical Traumas
Presented by Sarah Schroeder, MSW, LCSW
Open Discussion on Marijuana Use
Presented by Dr. Jordan Tishler
Adjusting to a New Normal
Presented by Sarah Schroeder, MSW, LCSW
Creating a School Safety Plan for Marfan/VEDS/LDS
Presented by Maya Brown-Zimmerman, advisor to The Marfan Foundation Professional Advisory Board and a Marfan mom, and Abby DeLong, VEDS mom and member of The VEDS Movement Steering Committee
Teen Panel
A panel of teens with Marfan, VEDS, and Loeys-Dietz share their insights about living with their diagnoses and answer questions from parents of other teens.
Medical Marijuana for Pain
Presented by Dr. Jordan Tishler
Tips for Coping with Depression, Anxiety, and Anger
Melissa Flint, PsyD
Midwestern University
The Role of Genetic Counselors in Your Medical Journey
Taylor Beecroft, MS, CGC
Texas Children’s Hospital
Relationships and Chronic Illness
Presented by Roanne Weisman, MSW, and Barbara Kivowitz
On Grief and Grieving
Presented by Susan Leshen, LCSW and Jan Lynch, MSN, RN of The Marfan Foundation
Managing Pain
Presented by Traci Speed, MD, PhD
How To Work with Your School Nurse
Presented by Kathleen Rose, RN
Empowerment and Finding Your Passion
Presented by Andy Erikson and Katie Lasky
The Other Half Of You: Mental Health For Beginners
Presented by Stephanie Randazzo, PsyD, Doctoral Student at AUSFBA
Let’s Talk About YOU: Self-Care and Empowerment Strategies
Presented by Jan Lynch, MSN, RN, Director of the Foundation’s Help & Resource Center
Social Security Disability
Presented by Kathleen Kane, Esq, and Jon Rodis, President of the Massachusetts Chapter of The Marfan Foundation and a National Disability and Medical Advocate for Rare Disorders
Physical Therapy
Presented by Michael P. Healy, PT, DPT, DOMTP, (Canada), CSN, CPT, TPI, MBA, President and CEO, Healy Physical Therapy & Sports Medicine
If you have any questions about these webinars or if you’d like to suggest a topic for a future webinar related to Vascular Ehlers-Danlos Syndrome, please let us know on our Ask a Question page.
The Marfan Syndrome and Related Conditions Empowerment Series is supported by an educational grant from the Chu and Chan Foundation.
