Need Advice on Clinical Trials

[njk0407]

Hi, my husband has been diagnosed with ALS. He is 36 years old. Dr. Bedlack said that he is about 1 year into progression. His breathing is at 101%, which is good according to them. He has 60% strength in his right hand and 36% strength in his left hand. He has left arm/hand weakness and weakness starting in his right leg. He also disclosed to the Dr. that he has tripped/fallen on 3-4 occasions. He said he feels like his toes get caught when walking. I am just starting to look into these so I don't have much info at the moment except what they gave me for Tirasemtiv Phase 3 Trial. He is eligible for (please forgive me if I'm not spelling them right):

1. Tirasemtiv Phase 3 (Immediately)
2. ALS Untangled (Immediately)
UPCOMING:
1. MP001(NP001)
2. Ritigabean (sp)

Any advice is greatly appreciated.

Thank you,
Nikki

 

[GregK]

Hi again Nikki,

There is a wealth of information stored in this forum.

Please explore the Search feature. Many of your questions will already have been answered.

 

[Nikki J]

Look at this page
ALS Clinical Trials | ALS Clinical Research | The Northeast ALS Consortium (NEALS)

There are archived webinars on a lots of topics. There have been a couple on retigabine. Maybe one on tirasemtiv. There was an excellent one today on current clinical trials but the link was not working yet when I checked just now. When you say ALS Untangled that is a website that you should check out. Dr B runs it. I think you mean the Lunasin trial he is running.

As Greg says there are several threads here you should read people are doing tirasemtiv and lunasin. Retigabine has been discussed. The webinar today had quite a bit on tirasemtiv

 

[njk0407]

Thank you for the info and guidance Greg and Nikki. I appreciate it more than you know.

 

[njk0407]

Nikki,
Yes I think it is the Lunasin trial.

 

[chally]

Hey Nikki 2 , I am about to start the lunasin trial. I' ll be posting here all about how it goes. Welcome !

 

[njk0407]

Chally,
Yes please let me know, that would be great. Thanks so much.

-Nikki

 

[kenschatz]

Nikki,
I do know the NP001 Trial has supposedly been coming for quite a while, they are doing it outside the US. Also, it works on a subset of ALS patients - he can take a specific bloodtest to see if he is a More viable candidate.
Good Luck!