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Empowerment Series

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:

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.

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.

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.

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