Re: Contact updates
- Hi Connie!! My son Cason is 4 1/2 years old and has MTM. I know that
you are probably real busy putting this conference together, but I
was wondering if you could explain to me what the conference is
exactly. I am clueless. I want to do everthing I can to help Cason
and if this is something that we can benefit from then I definately
want to be involved in it. So, when you have the time I would love to
know more about it. Thank you. Dana
--- In Myotubular_Myopathy@yahoogroups.com, connie guinn
> Hello, everybody!
> Let me introduce myself to those of you who don't
> already know me. My name is Connie Guinn, and my son,
> Benjamin lives with x-linked Myotubular Myopathy.
> I am writing to encourage all of you to enter your
> contact information under the database tab of the MTM
> Yahoo group, if you have not already done so.
> For those of you who have entered your information,
> please check to make sure that it is still current.
> I am pleased to announce that planning is underway for
> the first annual CNM/MTM family conferences for the
> US! In planning for this conference, we want to
> include your input, but we need a way to contact you,
> first. This is why it is critical for you to add to
> and/or update your contact information. If you are
> not comfortable having this information posted on the
> Yahoo group database, you can email me directly at
> We will be putting together some opinion polls soon
> that we would like for you to fill out and send back
> to us, so we can begin the planning stages for the
> conference. If anyone is interested in helping to
> coordinate this conference with us, please let me
> know. This is your conference, and we welcome your
> Be watching for the opinion polls to come within the
> next few weeks! We are excited about this exciting
> opportunity to put together a CNM/MTM family
> Thank you, on behalf of the CNM/MTM Family Conference
> Planning Committee!
> Connie Guinn
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