The NY Chapter has devoloped a pilot program for educating ER staff about Marfan patients, and what to look for if they see a patient coming in to the Emergency Room presenting symptoms like a aortic disection, or other critical life threating symptoms. At the last 2 chapter meetings there was strong intrest in this program coming to Oregon.  I personally realized how important this project could be to us locally when I was speaking with my husbands's first cousin, who recently finished nursing school. He was doing his intership at one of Oregon's biggest cardiac hospitals working in the ER department, and he has never even heard of Marfan's, even thou his own first cousin is affected !!! 

I also recently heard from the mother of one our members who died 5 days after the birth of her child in the summer of 1999 due to a dissection.  Her mother says she was in the ER for 45 minutes with chest discomfort with out being examined for possible cardiac problems before they realized she was critical, and by then it was too late. One needless death is one needless death too many!

Based on the NY program we are hoping to begin reaching out to all Oregon emergency rooms as quickly as possible.


Current Projects

This page was last updated on: August 19, 2005

This project will help us to develop a more complete and extensive network of medical professional who are knowlegeable about the Marfan Syndrome in Oregon and the surrounding regions and feel comfortable with treating Marfan related conditions.

This project will also enable us to help provide accurate and timely information to those medical professionals who are not well versed in these connective tissue disorders, but want to become more informed about the Marfan and related conditions.
Being a kid can be difficult enough in this day and age, but being a kid with a chronic, activity limiting, and potentially life threatning condition is even tougher.

This project will attempt to create a network of kids resources (with adults support) that will give them a chance to interact with other kids in the same situation. Whether it is thru writing to pen pals, getting together locally for activities (for those that live close together), chatting on the net, or thru other ways of helping one another that the kids think of on their own, we can help these special kids develop safe, fun, and enriching ways to show themselves and the world that they are tougher then Marfans.

This project will be ongoing.
This program will help identify and reach those Marfan affected in Eastern Oregon and help them gain access to the resources and contacts closest to them.

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