Old 02-22-2017, 08:22 PM #1 (permalink)
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Default Canadian early access to NurOwn is possible

PR is here.
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Old 02-23-2017, 04:27 PM #2 (permalink)
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Default Re: Canadian early access to NurOwn is possible

That's pretty amazing! I've read some good things about them. Sounds promising for us all xx
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Old 02-23-2017, 05:48 PM #3 (permalink)
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Default Re: Canadian early access to NurOwn is possible

Yet another throw money at NeurOwn ad. This is nothing more than a prospectus from a fund manager. It means nothing as far as getting approval from Health Canada. They are only now in Phase 3 trials in the states. Most of their press releases read like this.
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Old 02-23-2017, 06:19 PM #4 (permalink)
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Default Re: Canadian early access to NurOwn is possible

It seemed a bit more specific than that in terms of the players and Canadian/US approval pathways are always different. But no doubt, the proof is in what happens next.
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Old 02-23-2017, 11:24 PM #5 (permalink)
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Default Re: Canadian early access to NurOwn is possible

I think a positive take out would be that at least they are trying to get the ball rolling as fast as possible IF the treatment proves to work so they can get it out to everyone ASAP. No harm in that.
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Old 02-25-2017, 08:57 PM #6 (permalink)
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Default Re: Canadian early access to NurOwn is possible

I just got back from a meeting with a noted Canadian ALS clinician/researcher. Brainstorm has lots of PR and not much else. The US study was a phase 1 that showed it to be safe and with drop off after 3 weeks needs multiple treatments. That's it. This treatment has been used on 71 people worldwide over the past 15 years. Far from being a well proven treatment, they'll be years before being on the market. Sorry for the bad news, but it seems to be another slick sales job by brainstorm.
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Old 02-25-2017, 11:45 PM #7 (permalink)
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Default Re: Canadian early access to NurOwn is possible

Um, Vincent, no one said it's "well-proven" as yet. But to be fair, I believe 74 pts have been dosed to date, and that includes two Phase II trials, one double-blinded, from which the results are good enough to have had a successful End of Phase II FDA meeting and planning a phase III trial with a projected N of 150 in the US and Israel.

And yes, each of these trials only entailed a single "dose," as they are early trials. I (and the investigators) have no doubt multiple treatments will be required, and indeed the Phase 3 trial will include multiple treatments. Likely, the size of dose (number of cells) will also be escalated as more safety data becomes available.

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Old 03-15-2017, 09:55 AM #8 (permalink)
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Default Re: Canadian early access to NurOwn is possible

This may be my first post...so hello everyone!

I wanted to add that the Phase 3 study in the US will be 150 people as noted above, and it will be only spinal delivery (rather than spinal and muscle as in the earlier phase 2), and it will also be 50% placebo controlled. It is likely to have at least 6 enrollment sites. That's all the "inside info" i have at this time. Interesting approach for sure, and big credit to BrainStorm for sticking with the approach in ALS...lots of other stem cell companies have come and gone...but BrainStorm has stuck around and they at least deserve recognition for that.
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Old 03-15-2017, 12:51 PM #9 (permalink)
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Default Re: Canadian early access to NurOwn is possible

For those who do not know Rob, he is Director of Communications at the ALS TDI, which has hosted Brainstorm webinars in the past.
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Old 03-15-2017, 11:57 PM #10 (permalink)
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Default Re: Canadian early access to NurOwn is possible

Yesterday on the local Fox news station there was a story of an ALS patient. He lives in Texas and is raising money to go to Thailand for stem cell treatment. The local school, family and friends are raising the funds. I am assuming since the news was involved that some research had to be done on this treatment. The family is selling their home to help pay for the trip. I would think it would be very hard to set a trip like this up due to the long travel, time needed there and expenses. I also hope Thailand is not performing treatments there that could help and we don't have access to it in the US.

Have there been advances in the treatment over there? I didn't think that any treatment to date, has been successful in stopping or slowing this disease. I would also hate knowing that there is something in another country that could possible help my husband.

I think it is Regeneration Center of Thailand.
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Old 03-16-2017, 12:53 AM #11 (permalink)
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Default Re: Canadian early access to NurOwn is possible

I don't know if i would trust something from Thailand, but i guess keep an ear out for that guy the story was on. Hopefully it works for him and we see some proof.

I know there are also places in China which claim reversals and stopping progression but i watch a video from the Conference in Dublin and they said they haven't been able to track down these people who said they got better, until then we shall keep waiting
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Old 03-16-2017, 01:56 AM #12 (permalink)
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Default Re: Canadian early access to NurOwn is possible

I'm afraid, Deb, that the assumption that because local network TV covered this sad story that it represents a legit course of action, is not so. It is a good story that gets them eyeballs and so they covered it. What makes it good for them is bad for the patient. The center in question has no special protocol or knowledge that I could discern, no worthy results or publications flying under the radar (as if!) and in fact it links to US Web sites that have participated in NurOwn trials as evidence for its own validity.

We say this periodically, but I'll say it again: you can live with ALS until you can't, or you can liquidate your assets to fly somewhere else for an experimental treatment with roughly even odds that you will only die sooner and 100% odds that your estate will be poorer.

In following out the links, I noticed an article by Dr. Glass describing the state of affairs in stem cell research for ALS, so I have linked to it. The takeaway is that while progress has been made, obtaining maximum efficacy from this type of treatment will rest on facts about the disease that we don't yet know. So until that time, we are throwing darts at fairly small and blurry targets.

We talked on another thread about the loss of hope, and I would say, don't rest your hopes on one of the darts hitting its mark tomorrow, but rather what you can do/experience tomorrow.

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Old 03-16-2017, 09:46 AM #13 (permalink)
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Default Re: Canadian early access to NurOwn is possible

Totally agree with you Laurie. I had nightmares all last night about this.
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Old 03-16-2017, 04:33 PM #14 (permalink)
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Default Re: Canadian early access to NurOwn is possible

Hi All

Although stem cell treatment for ALS is being strongly promoted in private clinics around the world, they are being offered by for-profit clinics that offer no objective proof of efficacy and in some instances some treatments could put a PALs at risk for adversity. Careful study of the medical literature in highly regarded medical journals does not provide evidence for an effective stem cell treatment for ALS that is ready for those currently suffering from ALS. Therefore, not be rational for a knowledgeable person to conclude that effective treatment for ALS is currently a waste of money and time to pursue stem cell treatment for ALS outside of a legitimate clinical trial at this time. That being said, it should be noted that Brainstorm has concluded approved phase II trials with promising results and it has been approved to conduct phase 3 trials in 2017, which offers hope that legitimate progress in stem cell therapy for ALS is being made and that effective treatment could be available within a few years.
In 2011 I underwent a bone marrow harvest at Hadassah hospital in Israel, which was cultured for the production of neurotrophic stem cells. Because of legal issues at the time my cultured stem cells from Israel were administered to me by way of a spinal tap in Greece. By that time I had lost 20% of my body weight and was suffering shortness of breath, progressive muscle weakness, extreme fatigue and complete loss of appetite. Previously I had my diagnosis of ALS confirmed at 3 top-notch ALS centers, including the Mayo Clinic. Within a week of the stem cell treatment my appetite fully returned and my fatigue completely disappeared. Over the course of the following year I regained all the weight I had lost (without a PEG), my progressive weakness and progressive shortness of breath also slowed down significantly. Unfortunately, I was unable to get a repeat treatment. It is no longer available outside of a clinical trial. The clinical benefit I experienced was outside of a clinical trial therefore, it does not prove the effectiveness of stem cell treatment for ALS but it certainly seems as though the treatment I received and the benefits I experience were related. I subsequently found out that others who had received the same treatment had enjoyed varying degrees of success in diminishing or slowing down symptom progression. As you may imagine, I am encouraged that neurotrophic stem cell treatment for ALS will be of benefit and that Brainstorm will demonstrate whether or not their stem cell treatment is effective when the results of their forthcoming phase III studies will be completed and published. I remain optimistic that an effective stem cell treatment for ALS will be a reality in the 3 - 5 years, so I remain hopeful for an effective treatment of ALS in the foreseeable future.

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Old 03-17-2017, 01:37 PM #15 (permalink)
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Default Re: Canadian early access to NurOwn is possible

Elliot, thanks for sharing your story. I think it is really important that these stories are told and collected. I share your hope that after the phase 3 study of NurOwn is completed and the data analyzed that there will be enough evidence one way or the other to support that specific approach as a treatment for ALS. SO many people have questions about it and case reports vary, both from those inside and outside the official clinical trials, and as you said - its through the clinical trials that an answer will be known.
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