Living With Marfans

Massachusetts Marfan Online Group

On Line Support Group for EDS and Related Disorders

Medline Plus

National Liberty of Medicine

AskMe3


THANK YOU
I would like to take this opportunity to say Thank You to the following individuals for their help.

My wife, Kathleen, who is by my side, supporting me in my quest to make a difference in helping sufferers of Marfan, Loeys-Dietz, Ehlers-Danlos and related syndromes/disorders.  As a lawyer, she has aided me in applying for disability and helping so many others navigate the social security system.  She is willing to help other Marfan and related disorder individuals with her legal expertise.  She has assisted me in helping others not only with social security disability but many other legal/family challenges over the past 20 years.  You can contact Kathleen at kkanelaw@comcast.net for more information on how she can help you. 

My mother, family, and friends who have been at my side through the worst of my illness. 


I want to honor and thank my mother-in-law Sis Kane, who passed away during the summer of 2013, for not only in helping me in writing and maintaining this website but her love and passion for the Marfan and related disorder causes and the overall advocacy work that I do.  She has been a great inspiration to me and I will never forget her love and support.  I love you Sis!.

A special Thank You to the following:

Dr. James Heckman - BIDMC - Primary

Dr. Joseph Kannam - BIDMC-Cardio
Dr. Dwight Robinson - MGH-Rheumatology
Dr. Robert Johnson - Surgeon - Saint Louis University 
Dr. Chin Hur - MGH-Gastroenterology
Dr. Aleena Banerji - MGH -Immunology
Children's Hospital Boston, MA
Beth Israel Deaconess Emergency Unit, Boston, MA
Suffolk University - Boston, MA

Dr. Michael Murray - Geisenger Health Systems

Dr. Ron Lacro - Childrens - Marfan Program

Dr. Michael Singh - Childrens and Brigham Marfan Programs

Dr. Jacqueline Wolf -BIDMC - Gastroenterology

Amy Kaplan, former RN-Manager-NMF's/Marfan Foundation's Information and Resource Center

If my story can help just one individual that suffers
from Marfan Syndrome and/or related disorders, then I will be happy.

Thank you for your interest in my web site.
Please do not hesitate to contact me at anytime.

My email address JRMARFAN58@aol.com or JRMARFAN58@comcast.net.