Know the Signs, Fight for Victory

The Marfan Syndrome and Related Conditions Empowerment Series is a new webinar program launched in January 2018 to help people in our community improve their quality of life. The topics that will be covered in this series are selected based on the needs expressed by our 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 Marfan syndrome.

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.

Upcoming Webinars

Personal Perspectives Panels

Maximize Your Doctor Visits

This panel presentation will dig into practical ways you can get the most out of your doctor visits. Members of the Marfan, LDS, and VEDS communities will share personal experiences, with medical professional advise from Gretchen MacCarrick, MS, CGC.

Life After Aortic Surgery – December 2020

Featuring four young adults (two with Marfan, two with Loeys-Dietz) who have had aortic surgery.

Previous Webinars

An Exercise in Mindfulness

Presented by Susan Leshen, LCSW


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, CGCTexas 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


The Marfan Syndrome and Related Disorders Empowerment Series is supported by an educational grant from the Chu and Chan Foundation.

If you have any questions or if you’d like to suggest a topic for a future webinar, please email programs@marfan.org

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