“Chat Room” is not a current feature for the MTM Resource Group website.

MEANWHILE…

The largest and most active online community 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 link below (when working) would take you to the Myotubular Myopathy Resource Group chat room.  Note that these interactions are not monitored and we can not vouch for anyone's contact.