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Marfan Syndrome and Related Conditions Empowerment Series

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 

Personal Perspectives: Physical Activity and Exercise - September 9, 2021 at 7pm EST
We invite you to join 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 will discuss physical activity and exercise and address questions from attendees. 
 
Life Insurance When You Have Marfan, LDS, or VEDS: Your Questions Answered - October 13, 2021 at 7 pm EST
People in the Marfan, LDS, VEDS, and related conditions community want to know about securing life insurance. In this webinar, we feature an expert who can answer your questions about securing life insurance when you have a connective tissue condition. The zoom link will be sent to you after you register..

 

Previous Webinars

Making Meaning of Grief: A Personal Perspectives Panel - June 2021
Melissa Flint, Psy.D., FT, CCTP and a panel of community members discuss 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 2021
Featuring dads who have Marfan, Loeys-Dietz, VEDS, and/or have a child with one of these conditions.
 
Personal Perspectives Panel: Maximize Your Doctor Visits - January 2021
Practical ways you can get the most out of your doctor visits. Members of the Marfan, LDS, and VEDS communities share personal experiences, with medical professional advice from Gretchen MacCarrick, MS, CGC.
 
Personal Perspectives Panel: 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
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 or if you’d like to suggest a topic for a future webinar, please email programs@marfan.org.
 

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

Chu and Chan Foundation.