PTC124 Phase 2a Extension Study Families

Information

PTC124 Phase 2a Extension Study Families

This group is intended to be for families of the 38 boys who participated in the clinical trial of PTC124 phase 2a, to be able to share with each other the progress of our boys while on this extension study.

Members: 24
Latest Activity: Jan 19, 2016

Discussions

New consents

Started by Angela Feb 3, 2009. 0 Replies

Being Bad or Self testing

Started by Angela Oct 16, 2008. 0 Replies

Comment Wall

Comment

You need to be a member of PTC124 Phase 2a Extension Study Families to add comments!

Comment by Joanne Wechlser on September 28, 2008 at 2:41pm
We're finally scheduled for screening October 8th and 9th for 2a at CHOP. Anyone else here going to CHOP? First, we go Wednesday to Florida for MRI. If all goes well, we go back for the biopsy Oct. 30th. Gretchen, what site are you at?
Comment by Gretchen on September 28, 2008 at 2:28am
Nick will start in the 2a on October 15th. Part of me is scared to post it (say it out loud, share it) before he starts, in case it's too good to be true.

Joanne, I've always thought myself computer literate, but lately, I've realized that technology is moving much much faster than I am! :)

Ellen, please give us an update on how Tim's doing as he continues (hope all was well through the biopsy and hospital stay!)...we're just an hourish north in Mukwonago---would love to get together at some point, though our boys are 11 & 9, boys are boys and should be able to mingle....:)

Gretchen
Comment by Ellen Wagner on September 14, 2008 at 5:45pm
Tim is also in the 2a extension. He had his muscle biopsy last week in Cinn. His caringbridge site is http://www.caringbridge.org/visit/timwagner. We go back to Cinn on Sept 26 to start thr PTC.
Comment by Joanne Wechlser on September 14, 2008 at 3:07pm
Just figured out that we've been chatting under the discussion forum, rather than within the Groups section. Maybe I should have my 12 year old teach me how to use the computer. . . . . . Either way, would love to share experiences. We also have a caring bridge, but haven't started on drug yet and are still waiting to be screened. www.caringbridge.org/visit/adamwechsler
Comment by Jill Castle on September 14, 2008 at 1:21pm
If anyone is interested in following Anthony's progress on the drug check out our caringbridge site ok? www.caringbridge.org/visit/anthonycastle

I can only blog one place for now but I'll check in here when someone posts for me.
Comment by neeraj on August 17, 2008 at 5:16pm
my son is going to get screened very soon for the 2b trial and hoping for it to be all ok he will participate in the trial.My only worry is the placebo group but hearing if the results are good the trial may only last 6 months.I totally agree with you that we should share our experiences and the progress in the trial.It will benefit everyone and if we can group few parents we can advocate our concerns aswell.

my son is 8.2 years and doing well and i truly hope ptc to be a full treatment and very positively believe that these boys with nonsence mutation can be sorted.
 

Members (24)

 
 
 

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service