Discussion Group
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The largest and most active online
“Discussion Group” for patients and families affected by
myotubular/centronuclear myopathy is the Yahoo MTM
group. This terrific website is located at: http://health.groups.yahoo.com/group/Myotubular_Myopathy/
.
The Yahoo MTM
group is extremely welcoming to
new members. Members can share as much or as little as they like. Questions and
comments can be posted to the group as a whole, or to individual members, at
your discretion. Most patients and families affected by MTM/CNM find that
networking with others who are similarly affected removes some of the isolation
that can otherwise occur with rare disorders like MTM/CNM. Other families
affected by MTM/CNM understand and share the hopes and challenges that you are
experiencing, and are ready and willing to listen and offer support.
Further, the postings on the web site
routinely provide extremely useful and practical tips on everything from
pulmonary management (family’s experiences and perspectives on tracheostomies,
ventilators, suctioning, bronchitis, pneumonia, etc.), feeding tubes,
appropriate car seats, navigating the special-education services available for
children in your local school system, tips on traveling or vacationing with an
MTM/CNM child, etc.
The postings on the online Yahoo MTM
group are also a source of information regarding MTM/CNM educational
conferences. For example, in autumn 2006, Sarah
Foye in New Jersey, USA, organized the first-ever international MTM/CNM
teleconference, sponsored by the Joshua Frase Foundation. These were live,
toll-free calls (paid for by the
Joshua Frase Foundation) where dozens of families affected by MTM/CNM could
ask questions and here about the latest research, from world-class MTM/CNM
researchers. Yahoo MTM group members submitted many of their questions in
advance, by doing so collectively on the Yahoo MTM website.
If you are interested in the Yahoo MTM
group you can go there directly to join, or if you prefer you can email Sarah
Foye in New Jersey, USA: (E-mail: myopathy@optonline.net)
This web page was last updated: November 26, 2006.