# Clnical Trial with Trappsol Cyclo **URL:** \ **Category:** General\ **Created:** [July 13, 2022, 4:36pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762 "2022-07-13T16:36:10Z")\ **Posts on this page:** 11\ **Page:** 1
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [July 13, 2022, 4:36pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/1 "2022-07-13T16:36:10Z")
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](https://clinicaltrials.gov/ct2/show/NCT04860960?cond=npc1&draw=2&rank=9) and traveling to Fairfax Virginia. Wanting to share ideas and maybe suggestions. Thanks ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [July 14, 2022, 7:28am UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/2 "2022-07-14T07:28:22Z")
Hi Henry🙂 I’ll post the info re this trial…on other ataxia support groups. And, I’ll let you know if anyone answers. 🙂 ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [July 14, 2022, 10:25am UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/3 "2022-07-14T10:25:42Z")
Thanks Beryl! That would be great! I found out there is someone else who is in my state who is on it. ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [July 19, 2022, 3:22pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/4 "2022-07-19T15:22:10Z")
I believe that the person I am looking for now must be an infant or young child, especially NPC1.(more common for children). ---
**Author:** ![Parna](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/parna/32/5714_2.png) [@Parna](https://forum.livingwithataxia.org/u/Parna)\ **Post date:** [July 21, 2022, 2:05am UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/5 "2022-07-21T02:05:00Z")
All the best Henry! Do keep us posted. ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [July 22, 2022, 6:57am UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/6 "2022-07-22T06:57:37Z")
🙂 I posted on several groups, Henry…But so far no replies ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [July 22, 2022, 2:55pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/7 "2022-07-22T14:55:38Z")
Thanks Beryl! I’ll be going to Fairfax, Virginia for my first infusion on the 25th! 🤪 Wish me luck!!! ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [July 22, 2022, 3:09pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/8 "2022-07-22T15:09:46Z")
🙂 Not long now…good luck and very best wishes Henry 👍🙂 ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [February 19, 2024, 9:42pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/9 "2024-02-19T21:42:17Z")
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!!! ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [February 20, 2024, 11:48am UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/10 "2024-02-20T11:48:49Z")
I’m so sorry Henry… Thank you for participating. ---
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [February 20, 2024, 3:37pm UTC](https://forum.livingwithataxia.org/t/clnical-trial-with-trappsol-cyclo/8762/11 "2024-02-20T15:37:08Z")
I’m also very sorry to hear of your difficulties with the trial.