MediciNova-MN-166/ALS Study

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Lilacs53

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Hi everyone,

I received a email this morning from the CDC saying that a study is going to start on this drug called MediciNova-MN-166/ALS. The study is going to take place in Charlotte, NC., thought some from here who live near there might be interested. Here's a link that tells more about it.

ALS - MediciNova, Inc.
 

Gembead

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All the very best to those who take part.
Love Gem
 

boston

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Hi,
I am sorry but I cannot figure out how to post so I apologize if I violated protocol. My 18 yo son just went to a movie and his ALS afflicted dad had
an episode of incontinence. My issue is: why is brain tissue donation not openly discussed with ALS patients? I have followed the football story and
since my husband had a stroke three years prior to ALS (unrelated they say) I had already thought about brain tissue donation. So we have
arranged for donation after death and no pun intended, it is a no-brainer. There is no cure for this horrible disease so why not make it easy for
families to donate? My husband is 69, rapid progression but very lucky (I believe) that he has lost mobility but is only now losing speech.
 

affected

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Welcome Boston,

I believe most who donate brain donate the spinal cord as well.
 

GregK

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Hi there Boston.
Perhaps you could introduce yourself? But not here.
Go to the Welcome New Members Say Hello forum and click the New Thread button at the top left.
 

hjlindley

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My brain and spinal cord are going to the Mass General. I think they're going to have to wait for a while, because I'm seven years in can still talk, breathe, and eat. The first step was to register as a patient at Mass General. I gave her my social and she asked me if I still lived on Fulton Avenue In Dorchester. I haven't lived there since 1976. If I had my way would take the registry away from the CDC and give it to the Mass General.
 

Janie H

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This is my clinic, I have contacted Dr Brooks, thank you!

Janie
 

Janie H

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Lilacs53, this is what I got from Dr Brooks
The first MN-166 clinical trial is to establish safety tolerabiltiy of MN-166 in ALS pateints not requiring non-invasive ventilation (Trilogy). I am preparing a second MN-166 clinical trial for patients on non-invasive ventilation (Trilogy). This clinical trial has not been evaluated by the Carolinas HealthCare System Intitutional Review Board because we need to have a safety analysis of the first 30 pateints who have completed 3 months on MN-166. So far we are a third there. I will keep you advised as to the status of this clinical trial because we have a large number of patients on non-invasive ventilation (Trilogy).
Don't know if I will make the cut for this one.
 
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