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.
Personal Perspective Panels
Maximize Your Doctor Visits
January 28 (7 pm Eastern)
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.
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
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
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
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 or if you’d like to suggest a topic for a future webinar, please email firstname.lastname@example.org.
The Marfan Syndrome and Related Disorders Empowerment Series is supported by an educational grant from the
Chu and Chan Foundation.