How can we get the good Bishop on our team, an articulate guy with 150,000 parishioners and the Catholic Church, he could be a huge help in raising awareness....
A big welcome to all new members and hello to all that have been here a while Please do make yourself comfortable here at CMT-Support.com Even if you don`t...
JD, I have had some correspondence with the reporter, in fact I'm working on a reply to her right now.. I questioned her on the issue of her statement that CMT...
Ernie Becky and JD I do hope you all can reach this man and be of help to him and he gets proper Education on CMT and also educate that reporter Just my...
I hope the moderators don't mind....I jumped on board and went to the Diocese website and sent the Bishop a message about this group....I told him my parents...
http://www.jaxnews.com/opinion/2004/jn-letters-0819-0-4h19o1807.htm Working to raise MDA awareness 08-19-2004 Melinda Minish, a concerned Jacksonville resident...
Good for you Melody! If I could have gotten on that board I would have left a post too. I did e-mail the Bishop yesterday giving him more info on CMT and the...
I sent an e-mail to the reporter yesterday and she replied that she had sent it on. In that e-mail I gave a support group that would be close enough for him...
http://www.whnt19.com/Global/story.asp?S=2241839 2004 Jerry Lewis MDA Telethon MDA TELETHON TO HIGHLIGHT FIRE FIGHTER SUPPORT TUCSON, Ariz., Aug. 16, 2004 - On...
Melody.... Of course we don't mind. Many times we work behind the scenes, so
to speak, to bring CMT into public awareness and to get accurate, up to date...
Thanks for bringing this to all of our attention, Sal. The sad thing is that
so much of this kind of mis-information gets 'press time', especially in a
format...
I know you sent an e-mail and received a reply Sal, and really appreciate
your efforts so much! :) I've been following the discussion on the article
about...
I wanted y'all to know that I sent the following message to news@jaxnews
com . I also sent a similar, but re-worked message to the MDA. I hope you
find it...
Hi Erin, That sounds great to me. I had even thought of e-mailing the paper. It needs to be correct. Thanks much! ... news@jaxnews ... hope you ... any of...
Valerie, what did you think of your new neurologist? Why does he think you
have CNMT2 or HSN? I don't mean to ask so many questions, but my memory isn
t as...
Getting caught up on some posts that I've been wanting to reply to. ;-) I
feel really privileged to be part of such a great group of people who feel
so...
Hi Katherine... I'm wondering if you're still scheduled for the Gastric
Emptying Study tomorrow? If so, I want to wish you luck and know that I'll
be thinking...
Thanks Erin for remembering. It's been quite a week so far. My scooter is broken and it was too late to order a disabled ride so I've been phoning around for...
Hi Katherine, I just want to wish you well on your tests. Just know that I will be thinking of you. Please keep us posted as to the results. Take care. ... ...
Erin- According to our MDA rep. (Illinois/Iowa) MDA will help with genetic testing if the dr. writes a script. and if the dr. uses Athena (like we have a...
Oh Katherine... that's really a 'bummer'! It really is amazing how big of a
deal it becomes when our scooter or wheelchair isn't working. I know it
makes *me*...
Hi Katherine Sorry to hear about your scooter I do hope you have found a ride And I will bew tinking of you also And as others have said Please let us know...
MDA donated the scooter to me, and I'd be utterly lost without it. I depend on it for everything. I am finding it increasingly hard to use though as my right...
Very well done and said Erin Yes CMT does fall under the umbrella as you say And I do agree with you I am Figuring that is why so many CMTers and people that...
Good thing you clarified if you wondered about me or my thoughts.... my
*thoughts* I can give in a pretty short and understandable way. But about
*me*........
I'm glad you were able to get your rides coordinated for tomorrow. What
*would* we do without our friends! I believe that it normally (I hate that word) takes...
Good information Tanet..... So then Valerie (or anyone else) should get in
touch with their local MDA office *and* speak to an Athena representative to
make...
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