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Did an Israeli Company Developed a Cure for ALS?
sceptic
Posted: Friday, July 06, 2012 3:25:41 PM
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Lolo, it was suggested above that Hawking would be a good candidate because of the PR value of such an esteemed person showing improvement, thus greater attention, money, etc. that would garner. Perhaps in Israel this esteemed rabbi serves the same purpose.
Masha1
Posted: Friday, July 06, 2012 5:25:21 PM
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I already wrote previously that we went to Hadassah hospital in Jerusalem for evaluation in hope that My husband Joseph can be included in the trial. When they did not select him in June I asked if He can be treated as a private patient meaning that we'll pay for it. They said NO because this is not a treatment but a trial. I don't know how some people from Europe could pay and get there.
Masha1
ImInAwe
Posted: Saturday, July 07, 2012 3:26:27 AM
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DeeBee wrote:


You can get answers to technical stuff from the MNDA...........here's a quote....

'We’re always happy to answer your questions DeeBee – our ethos is to respond to research queries within three working days of receipt.'




Hi DeeBee,

I could be wrong, but I don't think that MNDA would be an organization that could answer specific questions regarding stem cell research. They appear to be an organization much like the ALS society of Canada that raises awareness, funds research and supports patient care. It appears that MNDA however, is a bit more involved with direct research that the Canadian association, like research into misfolded proteins, some new type of Ritulek, etc. Both organizations fund research toward stem cells treatments, but neither appear to be directly involved.

It seems to me that the people that could answer some of these questions are involved in this:

http://www.brainstorm-cell.com/index.php?option=com_content&view=article&id=99&Itemid=99

and this:

http://www.brainstorm-cell.com/index.php?option=com_content&view=article&id=98&Itemid=98

I don't think I'm alone in wanting to understand some basic concepts of this “miracle” cure experienced by the rabbi. Did the rabbi receive an intrathecal administration into the CSF? Or into the spinal cord with guided radiography (as it appears the MD in roy's post was doing but with fat derived stem cells)? What is the difference between the bone marrow derived stem cells used in BrainStorm and the now debunked an defunk X-cell center in Germany? Is it that in the latter, the cells were never differentiated, but in Brainstorm, they use a special process to differentiate these cells in order that they secrete GDNF and BDNF? If intrathecal administration of differentiated MSC holds potential promise, why did a more risky surgical procedure need to be developed in conjunction with Neuralstem (i.e. exposing a section of the spinal cord, mounting a specialized instrument onto the area, and inserting a probe into the gray matter in order to administer SC)? How do fetal spinal cord stem cells compare with differentiated bone marrow derived MSC with regards to efficacy in animal studies?

If the rabbi's experience does not end up being a flash in the pan and can indeed be reproducible, then perhaps this treatment can be expedited after Phase II for compassionate use for many more people? This technique may be a much easier and much less invasive procedure than the one done by the surgeon working in conjunction with Neuralstem.

I'm sure other inquiring minds would like to know the answers to some of these questions.

Bummer about your experience in Israel, Masha1.

As an aside, on the list of scientific papers included on Brainstorm-cell's website, was this:

http://www.ncbi.nlm.nih.gov/pubmed/17185746

I guess your Scotch eggs recipe could possibly make a difference DeeBee. :)
DeeBee
Posted: Saturday, July 07, 2012 4:17:06 AM

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Hello IminAwe

I pray that this story is more Scotch Eggs than Scotch Mist so I have instructed my 3D avatar to have a face to face with the rabbi.........

http://www.bbc.co.uk/news/technology-18721658


BertP
Posted: Sunday, July 08, 2012 9:34:00 AM
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may be related to BrainStorm's Technology?

Tech and Biotech: Primorigen gets SBIR grant for project with Medical College of WI

Primorigen Biosciences, 510 Charmany Dr., is getting a $344,000 Small Business Innovation Research grant for a project with the Medical College of Wisconsin, in Milwaukee. Primorigen makes products to help companies grow stem cells and turn them into specific types of stem cells.

The Medical College researchers are working to transform adult stem cells into nerve cells, with the ultimate goal of treating disorders such as Parkinson’s disease, Alzheimer’s, ALS (amyotrophic lateral sclerosis), and spinal cord injury.

Primorigen’s technology “lets the cells grow more quickly,” chief executive Chuck Oehler said.

Arshak Alexanian, associate professor of neurosurgery at the Medical College, has transformed human stem cells taken from adult bone marrow into nerve cells. When the cells were transplanted into injured rats, they improved recovery, the Medical College said. Primorigen’s technology is expected to help the modified cells multiply rapidly and more closely mimic the properties of actual nerve cells.

http://host.madison.com/wsj/business/technology/biotech/tech-and-biotech-primorigen-gets-sbir-grant-for-project-with/article_43d98198-c7c3-11e1-a8df-0019bb2963f4.html

Lolo
Posted: Sunday, July 08, 2012 1:22:38 PM

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Further to my post above:
 
http://nyti.ms/OGUr4r wrote:
Ethicists ask whether those with money and connections should have options far out of reach for most patients before such treatments become a normal part of medicine. And will people of more limited means be tempted to bankrupt their families in pursuit of a cure at the far edges?  “If we say we need research because this is a new idea, then why is it that rich people can even access it?” asked Wylie Burke, professor and chairwoman of the department of bioethics at the University of Washington.
ImInAwe
Posted: Sunday, July 08, 2012 1:47:44 PM
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DeeBee wrote:


I pray that this story is more Scotch Eggs than Scotch Mist so I have instructed my 3D avatar to have a face to face with the rabbi.........




You're a hoot DB. But then again, I'm partial to humour coming from the UK.

___________________________________________________________________________________________________________________________________

ALS tdi is an excellent website. I found many of my questions answered in this article by Michelle Pflumm:

http://blogs.als.net/post/2012/04/12/Neuralstem-surging-immunosuppression.aspx and all of the links and back links it contained.

I wrote to Brainstorm for answers I couldn't find on the ALS-tdi site.
Fafut_1
Posted: Sunday, July 08, 2012 5:30:58 PM
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ImInAwe - maybe brainstorm should have priority 1 in relation to treatusnow?
ImInAwe
Posted: Sunday, July 08, 2012 10:08:25 PM
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Fafut_1 wrote:
maybe brainstorm should have priority 1 in relation to treatusnow?


I have no clue.

However, IF after Phase II in Israel and Phase II in the US this procedure with MCSc passes the safety test, and IF there were other "incidental" dramatic improvements seen in patients during the second phase, it sure as hell would be number one on my list - even without the benefit of important long-term follow-up scientific data.

Way too early to tell yet?



ichisan
Posted: Sunday, July 08, 2012 11:10:50 PM
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It would be nice if some of the knowledgeable experts on this forum did a comparison between Brainstorm's stem cell approach and Dr. Hernando Rafael's omental transplantation. Both are claiming dramatic and permanent recovery. One is left to speculate whether both approaches have identical therapeutic targets.

Anybody?

Nemesis?

Olly?

ImInAwe?
sceptic
Posted: Monday, July 09, 2012 12:30:45 AM
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When Dr. Rafael works in conjunction with Mass General I will take it seriously.

Heck, if he works in tandem with Buddy's 24-Hour Bail Bond And Tattoo Parlor I will take it more seriously than I do now.
Fafut_1
Posted: Monday, July 09, 2012 8:34:48 AM
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@ ImInAwe - you're partially right. Remember that what is going on now is already phase I/II. Mice didnt only live longer - they were running again!

What can we do to support Brainstorm in its efforts and enable them to treat today's PALS even for €€€/$$$

Waiting till the end of phase II/III in the US may mean another 5 yrs from now...Will we exchange our thoughts then? Hope so....

I like your initiative so much....its the only one that wants to change something for todays PALS...can I do anything to contribute from Poland?

I wanted to raise some attention during euro football championship - Euro 2012 (was held in PL_Ukraine) but guess what - UEFA cares about $$$ only..
DeeBee
Posted: Monday, July 09, 2012 1:03:31 PM

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Newbies should consider the following sobering note that I've just received from the MNDA.............

'Thanks for your email.

The Rabbi story describes a man who not only has MND but also a second
disorder called Myasthenia Gravis. He was given the NurOwn stem cell
treatment on a compassionate basis. He's not involved in the Brainstorm
trial as his progression and symptoms are not directly comparable to
other participants. Although his current abilities look encouraging, due
to the Rabbi also having a second condition, it won't be possible for
the trial leaders to determine whether the treatment is having an effect
on his MND, his MG, or whether it's due to the placebo effect.

As you're probably already aware, the Brainstorm trial is currently
ongoing to determine whether the treatment is safe. At this stage, it's
simply too early to tell whether the NurOwn treatment is truly effective
given the small number of participants. As far as we're aware, we
haven't heard any other news of people regaining abilities from this
trial.

I hope this information has helped.

Kind regards,

Research Team
Motor Neurone Disease Association'
ichisan
Posted: Monday, July 09, 2012 2:24:56 PM
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DeeBee, I noticed that MNDA had nothing to say about the stem cell research that was done on mice models of ALS. That being said, Brainstorm did say that the first trial was a safety trial. The efficacy trial is next. We should wait for it, in my opinion, although the current reports are very encouraging.

The cynic in me makes me wonder whether there might be some sort of hidden competition between MNDA and other research organizations. Human nature being what it is, I'm always worried about conflicts of interests.

Louis
ImInAwe
Posted: Monday, July 09, 2012 3:34:16 PM
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DeeBee wrote:
...not only has MND but also a second
disorder called Myasthenia Gravis. ....... He's not involved in the Brainstorm
trial as his progression and symptoms are not directly comparable to
other participants.


Yeah, those details are sobering. Interesting that they aren't mentioned in many of the press reports including this one:

http://www.jspace.com/news/articles/als-suffering-rabbi-able-to-walk-and-talk-again-after-new-treatment/9750


DeeBee wrote:


As far as we're aware, we haven't heard any other news of people regaining abilities from this trial. (written by MNDA to DB)



I wonder how current that info is, given this statement in the news report above:

"In January 2012 the Company reported initial safety data from the first four patients in BrainStorm’s ALS Phase I/II human clinical trial, indicating that treatment with NurOwn did not present any significant side effects and demonstrated some beneficial clinical effects. After reviewing this safety data, the Hadassah Medical Center ethical committee granted approval for the trial to continue. Interim results for the first 12 patients are expected in July 2012."

The MSC-NTF procedure appears to be a single IT injection into the CSF.
http://clinicaltrials.gov/ct2/show/NCT01051882?term=NCT01051882&rank=1

(Now I see why you keep on directing people to ask their questions to MNDA, DB).
ImInAwe
Posted: Monday, July 09, 2012 4:04:12 PM
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ichisan wrote:
comparison between Brainstorm's stem cell approach and Dr. Hernando Rafael's omental transplantation



IMHO, the only people that could give an intelligent answer to your query are neurosurgeons and stem cell researchers. (also, maybe Nemesis).

In my very uneducated (regarding this topic) opinion, they are very different approaches, obviously in procedure, but also in rationale of action toward regeneration. The secretion of neurotrophic factors and the hope for neuro regeneration are the only similarities my bystanders brain can see.
Fafut_1
Posted: Monday, July 09, 2012 5:18:41 PM
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the reply by MNDA should be veryfied by ALSuntangled:) seriously being rather for conventional medicine I found it strongly inappropriate....:

a)so what that he has MG and ALS...if it works for both should also work for single illness
b) what they can know about other patients? they know nothing more than it is revield by media
c) placebo effect....I guess placebo cannot make you walk once you are unable to
d) efficacy can be observed during I/II and should be especially when considering terminal illness with no other treatment options.

I suppose MNDA has its own format when it comes to answering - they only change names of drug being tested.

They will never see single dollar nor euro from me.

I guess some oldies should consider source of information at times;) now seriously Dee - I loved your dog with smoking pipe as avatar - can you consider it back?:)
DeeBee
Posted: Monday, July 09, 2012 5:41:43 PM

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The MNDA organize the annual ALS/MND Symposium so their contacts must be international and info is therefore not sourced just from the news media.

( We all know how much the tabloids love magic, mystery, romance and countless miracles ).
Fafut_1
Posted: Tuesday, July 10, 2012 2:38:47 AM
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Dee - certainly they do have the connections, however when it comes to the trial especially at its infancy, noone expect from Israeli MoH and Brainstorm gets any data...ste by step we will know soon.

ps - get back to smokey dog instead of clean teeth monkey:)
DeeBee
Posted: Tuesday, July 10, 2012 4:39:47 AM

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I'll resurrect the pooch but he's in the doghouse at the moment............

http://www.youtube.com/watch?v=9iDZYiAH-2I
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