Hello all! Just reaching out to any member who is in this clinical trial - Phase 3 Study to Evaluate Intravenous Trappsol(R) Cyclo(TM) in Pediatric and Adult Patients With Niemann-Pick Disease Type C1 - Full Text View - ClinicalTrials.gov and traveling to Fairfax Virginia. Wanting to share ideas and maybe suggestions. Thanks
Hi Henry🙂
I’ll post the info re this trial…on other ataxia support groups. And, I’ll let you know if anyone answers.
Thanks Beryl! That would be great! I found out there is someone else who is in my state who is on it.
I believe that the person I am looking for now must be an infant or young child, especially NPC1.(more common for children).
All the best Henry! Do keep us posted.
I posted on several groups, Henry…But so far no replies
Thanks Beryl! I’ll be going to Fairfax, Virginia for my first infusion on the 25th! Wish me luck!!!
Not long now…good luck and very best wishes Henry
Hi all, just updating on where I am at with this trial.
Going on almost 14 months and things are getting worse not better with this infusion. I am probably going to call it quits. I mean I should have seen some positive results by now, My hearing (side affect) is also getting worse! Plus my arms can’t take much more of jabs from the infusion. I am always falling a lot that my back has said enough. I MADE THE WORST CHOICE TO START THIS TRIAL!!!
I’m so sorry Henry…
Thank you for participating.
I’m also very sorry to hear of your difficulties with the trial.