This is Jonathan Rodis from Boston， Massachuseets in the U.S. I am very
active in raising Marfan awareness all around the world and I wanted to
write you and say hello. I may have sent you my website a while back but
I have updated it recently and wanted to send the latest version.
My website is located at www.jrmarfan58.com. This site is a first hand
account of what it is like to have Marfans and it provides accurate， well
researched information that everyone can utilize in understanding the disease.
I believe more knowledge of Marfans can save lives and help improve the
daily living of those that suffer with it. I also have the NMF’s website
linked to my site as well as many other informative links and research.
I have dedicated my life to spreading the word about Marfans and as you
will see in my website， I have come a long way in such a short time. I
hope to create a network of programs that will improve hospital awareness
in every hospital， in every country. Working together， we can make this
a reality.
Please feel free to write me with any questions or if you want to share
information or to talk.
Best Wishes，
Jonathan Rodis
Jrmarfan58@aol.com
2006年1月29日
【要訳】
ボストンのジョナサン・ロディスという方からの自分のＨＰの案内です。「世界を視野に入れて、活発にマルファンに関する周知活動を個人のサイトでやっています」とあります。前にも送ったかも知れないけれど最新版を送りますと言うことです。アメリカのＮＭＦにリンクしていて、マルファンに関する情報を入手できます。遠慮なくコンタクトしてくださいとありますから、ＮＭＦの会員かなとも思います。ホームページも見てみました。家族のこと、病気のこと、生活のことなど載っています。
www.jrmarfan58.com.
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