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. Recordings from the E3 Summit in 2020 that relate to these issues are also included here.
Please register in advance for any of the webinars you would like to participate in. A recording of each will be available on our website for those who are unable to participate live.
Please note that any registration button will take you to The Marfan Foundation’s website. The VEDS Movement invites the VEDS community to participate in these webinars because many of the challenges of living with Marfan and VEDS overlap.
Upcoming Webinars:
Previous Webinars:
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.
Recording coming soon
Personal Perspectives Panel: Dads with Marfan/LDS/VEDS
March 31, 2021
Maximize Your Doctor Visits
Presented by members of the Marfan, LDS, and VEDS communities with medical professional advice from Gretchen MacCarrick, MS, CGC.
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
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
Open Discussion on Marijuana Use
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 the Vascular Ehlers-Danlos Syndrome Empowerment Series or if you’d like to suggest a topic for a future webinar, please Ask a Question.
To get medical information on VEDS from a webinar in The VEDS Movement’s Virtual Medical Symposium Series, click here.
The Marfan Syndrome and Related Conditions Empowerment Series is supported by an educational grant from the Chu and Chan Foundation.