I'm not sure if I ever passed this on to the groups. There is a publication called Disabled Dealer. It comes out monthly and comes for your region of the...
Michael ...as usual your blog is beautiful and inspirational... thanks so much for sharing all your thoughts..you can never know who you have touched and what...
I am having a hard time commenting on this email because I don't know how much experience you have specifically with DMD and while I agree that the lack of...
Thanks Bob I will ask these question again, thanks Michael Keen, Spirit Roller Ministries-Minister www.spiritrollerministries.org Office: 540-337-1540 Home:...
Mike,  People with DMD who have a diminished ejection fraction can live for a very long time. The profound immobility associated with DMD results in less...
The Journey On the way home from a devastating day, we rode somberly down the Virginia Interstate toward our home in Waynesboro. The entire van was silent even...
Has anyone ever had their insurance pay for an endless pool? If so, what type of letter did you need to get one? Diana, Mom to Vincent, age 20, with DMD ...
Hi, My eldest son Ciarán, 21 DMD, suffers frequently with very cold feet. Sometimes even one foot very cold and one foot normal!! I presume this is a...
Ephraim Purcell
ephpur@...
Apr 13, 2009 6:21 pm
21989
A new update has been posted at: http://www.caringbridge.org/visit/mjpurk and also at: http://www.caringbridge.org/visit/b4sma  MJ Purk SMA type I+, 21 years...
My 16 year old with DMD is at the other extreme. He's too big. he hasn't been weighed recently but I'd put it at 180. My concern is losing the weight when he...
Kmmx2@...
Apr 9, 2009 12:58 pm
21986
I can really understand your concerns. I do know a number of young men who weigh very little and are still doing fine. Personally, I would like to see a...
Terri...my son Tracy weighed the same at 21..he had been up to 120 during adolescent years etc...I think they go thru stages..he has never had a feeding tube...
I am trying really hard not to be scared, in my head I am fine and I know it doesn't have to mean it can't be fixed but I feel scared in my heart. My aid and I...
Happy Friday everyone. Just posted "Art of Listening" on my blog. http://irishsea-mark.blogspot.com/ Have a great weekend, Mark Happy Friday everyone. Just...
Great blog post, thanks for sharing.  Cheers - Mark ... From: Marie Pichaske <GenMedLabMom@...> Subject: [MD-List] Trake (Trach) Story - new post...
Hey Ephraim, I work with Toshi and Eric, (and am a mom with a son with dmd). I'm no scientist but I can tell you that the gang is as excited as everyone else...
Thought I'd share my son's story about getting a Trake. see the web address below. thanks! Marie -- Marie GenMed Lab Mom http://genmedlabmom.blogspot.com...
Hello all, I saw Jeff's post and thought I'd add my journal piece to the mix - the exon skipping work was done at CNMC where I work and we're all very excited...
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