Keith & Jill VE's Discussions (71)

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

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

 2 Mar 22
Reply by Tao Wang

"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
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

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