Thu, 18 Apr 2002 02:42:27 EDT
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Hello everyone,
I am a co-owner/founder of a list of folks (approx. 225 from around the
world) with an incurable autoimmune disease called Myasthenia Gravis. It
comes under the umbrella of the Muscular Dystrophy Association. It can be
very debilitating. A great many of our members cannot work and are often
limited in the care they can give themselves. Even a great many doctors
haven't "heard" of us; ER personnel are stymied when a myasthenic crisis
arrives, unable to breathe, swallow, sit up etc. This disease is considered
rare and is listed in NORD's database (National Organization of Rare
Diseases.) There is also a foundation, MGFA (Myasthenia Gravis Foundation of
America.) We are in essence, some of Jerry's kids.
Our list is 3.5 years old. Last month, we lost our sponsor who himself, is a
Myasthenic. Due to health reasons etc., he felt he could no longer continue
in this capacity for us. So, we are looking for a new host site.
Do any of you have ideas for us to peruse? We average 15+ email per day and
really slow down on the weekends/holidays.
There is nothing like "like others" when you are in a life situation like
ours.
Thank you for your time and help,
Linda Newell
Myasthenic Meeting Place
PS Our new website should be up and running in about two weeks. We lost that
as well. It will be www.myasthenicmeetingplace.org. Meanwhile, visit
<A HREF="http://www.mgscotland.org.uk/index.htm">Myasthenia Gravis - Scotland</A>
This site is maintained by Brian Houston. He is currently building the new
site for our revamped group.
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