ANNOUNCEMENT: New Marfan Syndrome Support Group Web Site

Cross-Post To All Marfan Lists: (I apologize, cross-posts are
obnoxious, but sometimes the most effective)

QUICK VERSION:
I have created a new online support web site for people effected by
Marfan syndrome. IT is located at: http://www.marfansyndrome.us/ . The
intent of the website is not to supplant any existing site, but to
enhance the effectiveness of all Marfan resources on the web by acting
as a highly publicized portal, or hub, for anyone looking for
information about Marfan. The new http://www.marfansyndrome.us/ web
site brings something new to the Marfan community: it is an
interactive site, you can post your thoughts, add your web links and
share your experience with the rest of the world. Please visit the
site, register for free, and help others to help themselves through
new knowledge.

Sincerely;
Mike Newman - Webmaster, MarfanSyndrome.us

LONG-WINDED VERSION
An oft-quoted cliché is that Knowledge Is Power, but the funny thing
about clichés is that they usually contain some grain of truth. In the
case of people who are diagnosed with Marfan syndrome, knowledge is
more than power; it might be the key to saving a life--it is what you
don't know about Marfan that will kill you.

I was diagnosed with Marfan syndrome in 1996, at the age of 20, and
only recently have really made any serious attempts to come to terms
with what Marfan is and learn about just how much of my life is
dictated by this condition. Sure, I've been under a treatment regime
of beta-blockers since my initial diagnosis, but really wasn't
interested in the details and hadn't been getting regular checkups or
echos--many people would correctly identify my behavior as denial. But
we can't live in the dark forever, and the light came on for me about
18 months ago when my kids' cardiologist wouldn't let me leave the
clinic without scheduling my own appointment. He pointed out that I
was taking every precaution for my kids except one, making sure that I
live long enough to remain their father.

Since that day, I've been much better about caring for myself, and
frequently research Marfan syndrome on the web and regularly troll the
Marfan newsgroups to see how other people are dealing with this
condition. What I seem to have missed is a central place where I can
find info about Marfan and share my knowledge and experiences as well,
a place to give and take…. So, I built one.

Please visit http://www.marfansyndrome.us/ and become a member of the
community by registering for free. I can't maintain the site alone; an
interactive web site will only flourish if people actively use it.
Otherwise it just becomes one more stale site with links to other
stale sites, forever looping into infinity. But if you take part, and
others take part it can be something great: a virtual meeting place
where people of diverse opinion and experience can enlighten and
enhance each others' lives.

Please help spread the word about this new site to other people who
are effected by Marfan syndrome, whether they are patients, loved
ones, or medical professionals.

Sincerely;
Mike Newman - Webmaster, MarfanSyndrome.us