Clnical Trial with Trappsol Cyclo

General
#1

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

#2

Hi Henry🙂
I’ll post the info re this trial…on other ataxia support groups. And, I’ll let you know if anyone answers. :slightly_smiling_face:

#3

Thanks Beryl! That would be great! I found out there is someone else who is in my state who is on it.

1 Like
#4

I believe that the person I am looking for now must be an infant or young child, especially NPC1.(more common for children).

#5

All the best Henry! Do keep us posted.

#6

:slightly_smiling_face: I posted on several groups, Henry…But so far no replies

#7

Thanks Beryl! I’ll be going to Fairfax, Virginia for my first infusion on the 25th! :crazy_face: Wish me luck!!!

#8

:slightly_smiling_face: Not long now…good luck and very best wishes Henry :+1::slightly_smiling_face: