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Category: Community
Forum: Teams
Thread: DANIELE TEAM NEED YOUR HELP  |
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Thread Status: Active Total posts in this thread: 518
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Johnny Cool
Ace Cruncher USA Joined: Jul 28, 2005 Post Count: 8621 Status: Offline Project Badges: 
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fabama & Daniele My prayers and thoughts are on your way What JP posted ...  |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Dear friends, Daniele has a MISSENSE MUTATION IN EXON 14, and no one else in the world has this kind of mutation, or there no one else that have reported it. PTC 124 will not work for Daniele's mutation and my wife has the same mutation too. You can find more information if you visit Il Blog di TOTO & DANIELE TOTO & DANIELE Blog (english by Google translate) TOTO & DANIELE Blog (français by google translate) TOTO & DANIELE Blog (deutsch by Goole translate) Other languages avaliable in the blog using the Gadget by Google. You can find other informations and photos visiting DAMD Daniele Against Muscular Dystrophy The same translation gadget by Google is available in all pages. fabama & DANIELE I wish you all the best of luck.  |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Fabama, my prayers are for you, Daniele, and your famly
John |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Well DARN  What do we do now?  I really dont know what to do now. It seems there are no hopes for us with the actual clinical trials. It also seems there is no hope for a treatment for this kind of mutation. We only have to pray and live the best we can. Please help us by conveying our story to many people as possible. More people will support research, greater the chance for Daniele to be able to heal and ... survive this terrible disease. Thanks my friends. fabama & DANIELE Il Blog di TOTO & DANIELE TOTO & DANIELE Blog (english by Google translate) TOTO & DANIELE Blog (français by google translate) TOTO & DANIELE Blog (deutsch by Goole translate) DAMD Daniele Against Muscular Dystrophy [Edit 1 times, last edit by Former Member at Aug 1, 2008 9:34:54 PM] |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Okay. So we take a deep breath and start again. You know where to post to find us if there's something else we can do.
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Thanks GP, Johnny Cool, Blizzie, Guitar Man.
Thanks for all yours prayers and thoughts. Let's hope in something new from researchers. fabama @ DANIELE |
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Johnny Cool
Ace Cruncher USA Joined: Jul 28, 2005 Post Count: 8621 Status: Offline Project Badges:
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Thanks GP, Johnny Cool, Blizzie, Guitar Man. Thanks for all yours prayers and thoughts. Let's hope in something new from researchers. fabama @ DANIELE fabama, where there is a will, there is a way. Tough times don't last. Tough people do. Let us all hope that this is true. |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Fabama
Good morning Drop me an e-mail Thanks & regards Regards JP |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Fabama Good morning Drop me an e-mail Thanks & regards Regards JP Hy JP, good morning. here is my e-mail: fabama@mclink.it Have a good day my friend. fabama & DANIELE |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
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