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These trials are all too far for us to travel:(

Are you eligible? They will pay for hotel costs.

I woud make every possible effort to get to one of those site. It may save your life or your loved one's life.

You have a 33% chance of not getting the drug if you go.

You have a 100% chance of not getting the drug if you don't go.
 
Just another link to see if there is a trial site near you. Also the qualification has changed from 24 months to 36 months from onset.

I am going in for round 5 of 6 next week. I am 99% sure that I am getting the placebo but am convinced the drug works based on what I have seen in our group of four and HP’s experience. If the DSMB steps in, everyone in this trial will get the full dose. At this time I feel like it's our only chance.

A Study of NP001 in Subjects With Amyotrophic Lateral Sclerosis (ALS) - Full Text View - ClinicalTrials.gov
 
Happyphysicist says NP-001 stops progression cold.This seems to good to be true.I would like to know where you get your info.
I would also like to know some peoples expectations of the demex trial.
 
I agree Happy! I have had the opportunity to talk to him, and it really touched me that he is following dad so close and is TRUELY concerned for his well being. I feel that some of the other doctors we have encountered in the past have let us down, and really dont seem to care or even pretend to care about dads well being. I really do think the timing of everything happening is just maybe a stroke of bad luck. It all sucks none the less (sorry for the language, I can't think of a better word!). I will keep you in my prayers, I really do hope Dr. Kasarskis is onto something, and either way you, Dad, and everyone else in this study are pioneers in helping finding a cure for this disease. I am humbled by everything that you endure and are willing to give yourself to save others! please keep this in mind... in my heart, i believe when caring for someone you love, it is never a burden, it is a gift. ( I felt the need to let all PALS know that.)

I will update more on monday night of what the results are for Dad. Thank you all for your concern, I am praying for you too!
soft and gentle hugs...
Kari
 
Happyphysicist says NP-001 stops progression cold.This seems to good to be true.I would like to know where you get your info.
I would also like to know some peoples expectations of the demex trial.

I get my info from my own experience, but this experience is duplicated in at least one other person (Persevering) and improvements are reported by two others. Relative to NP001 the expectation for Dex in much lower.

This thread is very long but very informative:

Neuraltus - ALS Research & Treatments - ALS Forum

Here is a nice quick introduction to NP001:

Neuraltus pinning hopes on Lou Gehrig?s drug | San Francisco Business Times

Note, the number is not large, but the effect is unprecedented: i.e. IMPROVEMENT!
 
Thanks, HP, and thanks to all patients posting their data.

Having access to data is a wonderful help to other patients making decisions on treatments inside (or even outside) a clinical trial.

Many of us are praying that this turns out to be the real deal. Thanks.
 
I wish you the best happyman.I will follow you on plm.If your improvement continues this is the best drug ever.
I start the dex trial on thursday and along with your NP-001 trial i think things are happening and everyone should be very excited.
 
I wish that I was eligible to be in this trial but I am thrilled for those who can be in this trial. I would encourage anyone who can to find out more about signing up for this trial.

Good luck to all in this trial and thank you.

Trixie
 
heart broken son has a c-pap for sleep apena he cant do this trial
 
ALSA issued a statement yesterday:

Neuraltus Pharmaceutical NP001 Trial Accepting Qualified Participants - The ALS Association

Neuraltus Pharmaceutical NP001 Trial Accepting Qualified Participants

July 19, 2011
NP001, a novel, proprietary approach that regulates macrophage activation, targets diseases including Amyotrophic Lateral Sclerosis (ALS), Parkinson’s disease, Alzheimer’s disease and multiple sclerosis. NP001 is designed to transform select immune cells (macrophages) from a neurotoxic state to a neuroprotective state, normalizing the cellular environment of critical nerve cells.

Neuraltus’ focus on macrophages is based on the recent understanding of the fundamental role of inflammation and macrophages in neurological diseases. Runaway inflammation has been associated with many of the symptoms seen in severe neurological diseases and is believed to play a major role in the progression of these diseases. Treating inflammation of the central nervous system (neuroinflammation) provides a robust platform for addressing upstream disease mechanisms associated with the most severe neurodegenerative diseases.

“This is an incredibly exciting time in ALS research with many novel and particularly exciting therapies being tested,” said ALS Association Chief Scientist Lucie Bruijn. “We encourage qualified candidates to enroll in this and other trials to hasten the process of gathering of data, which can lead to the discovery of effective therapies. However, until trials are completed, there is no way to know whether the agent under study is working.”

“The Neuraltus trial provides promise and is based on a rational scientific hypothesis targeting neuroinflammation,” said Richard Bedlack M.D. Duke University, Dept of Neurology. “This is one of many hypotheses that are being investigated as a key contributor to the disease.

We are very positive about the scientific underpinning of this trial—attacking neuroinflammation at the cellular level,” said Principal Investigator Robert G. Miller, M.D. of Forbes Norris ALS Treatment and Research, California Pacific Medical Center. “We have been very happy with the safety record to date of NP001.”


The Neuraltus Pharmaceuticals NP001 clinical trial is a Phase II double-blind, randomized, placebo-controlled multi-center study. The purposes of the trial include efficacy, safety and dosage. Patients receive a total of 20 intravenous injections of anywhere from 3 to 5 injections each month. There are to be two different dosage groups and one placebo group and will have a duration of six months plus three additional months of monitoring. The trial is currently recruiting at several locations throughout the United States. To view the trial criteria visit A Study of NP001 in Subjects With Amyotrophic Lateral Sclerosis (ALS) - Full Text View - ClinicalTrials.gov.
 
I am hopefully going to be participating in this study. I will go down for the screening in the middle of August.
 
llwlpn, Please keep us posted, and please post data at plm . Thanks. God bless.
 
Anyone doing this trial in Oregon/Washington? Anyone met Dr Goslin?
 
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