Keith & Jill VE's Discussions (71)

Search Discussions

View

Discussions Replied To (62) Replies Latest Activity

"Very sorry to hear this.  I can still vividly remember the 'punch to the gut' when w…"

Keith & Jill VE replied Mar 21, 2019 to Wait four months to join clinic trial or start with prednisone now

 3 Jun 27, 2019
Reply by Shawn

"We don't own one yet, but I have read good things about the EZ Cruiser Lite and the…"

Keith & Jill VE replied Nov 22, 2018 to foldable elecrtic wheel chair

 3 Feb 23, 2019
Reply by Shawn

"Actually, quite the opposite!  Last year, PTC was charging my insurance company a ri…"

Keith & Jill VE replied Feb 14, 2018 to Emflaza (aka deflazacort) Approvals

 12 Feb 14, 2018
Reply by Keith & Jill VE

"We haven't seen any additional side effects from Emflaza.  Unfortunately, my son (13…"

Keith & Jill VE replied Dec 30, 2017 to Emflaza (aka deflazacort) Approvals

 12 Feb 14, 2018
Reply by Keith & Jill VE

"Glad to hear you are able to continue receiving the drug! Still puzzled by PPMD's d…"

Keith & Jill VE replied Oct 22, 2017 to Emflaza (aka deflazacort) Approvals

 12 Feb 14, 2018
Reply by Keith & Jill VE

"Very nice analysis!  Great job! We gave our son (now 13) idebenone years ago until i…"

Keith & Jill VE replied Sep 24, 2017 to What is the recommended dosage for CoQ10 (Ubiquinone)

 1 Sep 24, 2017
Reply by Keith & Jill VE

"We have made it through the approval process but I'm still furious about this whole…"

Keith & Jill VE replied Sep 16, 2017 to Emflaza (aka deflazacort) Approvals

 12 Feb 14, 2018
Reply by Keith & Jill VE

"This is great news!   Forgive my ignorance, but would this help boys without a nons…"

Keith & Jill VE replied Apr 15, 2016 to NICE Recommends Translarna

 5 Apr 16, 2016
Reply by Shelly

"Can you order it from Masters in the UK?  We're in the US and have been ordering it…"

Keith & Jill VE replied Sep 16, 2015 to About Deflazacort

 6 Sep 18, 2015
Reply by Andrea Cleary

"Leresa, Very sorry to hear about your son's diagnosis.  Fortunately, you've found a…"

Keith & Jill VE replied Jun 27, 2015 to participating in research trials

 13 Jul 9, 2015
Reply by Robin Taylor

RSS

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

Members

Events

Terms of Service

© 2020   Created by PPMD.   Powered by

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