clinical trial for SB_509

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rowland's wife

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has anyone heard of SB-509? my husband got a letter about participating in a 11 month clinical trial for SB-509. It says that when it is injected into the muscles of the neck, arms,and/ or legs,the drug enters the muscles and nerve cells around the injection sites and causes these cells to make a protein. This protein causes cells to increase production of another protein called vascular endothelial growth factor(VEGF), which may improve the structure and function of nerves and muscles.The increase in an individuals own VEGF proteins may protect and repair the damaged motor nerves and muscles caused by ALS.
 
That is the first I heard about this one, keep us informed.
 
Are they asking for any money to participate? Be very cautious.

AL.
 
study?

looks like a legitimate study to me. Where did you get the idea money was invloved?
 
This is also reported on the MDA site under research, then clinical trials.
Here's the link: (I hope this works!) www.mda.org/research/view-alsctrial.aspx?id=224

It says basically the same as the other link posted above, but just another reference.

Interestingly, at the ALS Advocacy conference in DC, a similar thing was mentioned about injecting the muscles. Only, this was about stem cells.

A reseacher from University 0f Wisconsin-Madison, Prof. Clive Svendsen, talked about stem cells. (now I am really paraphrasing here) He is working with this research and talked about when stem cells are injected into the spinal cord, that is for the neurons in the cord; and they were exploring the theory that by injecting stem cells into the muscle as well, you can then have a connection between the cord and the muscle, and therefore, control of movement. ( I could be completely overstating this; if someone else has a better recall- please correct me!)
 
There was a study on that same site last year asking participants for $1500 to join. We were unable to find any info on any of the "doctors" running it. So I said be wary of the trial. Just because it's on a government trial? site it may still not be moderated.

AL.
 
Thanks for the link strikeout...seems once again I would be excluded on the grounds of FVC and bulbar mnd not allowed to participate. The theory does however back up what Brian Dickie, head of mnd assoc research UK said at a conference on stem cell treatment last week. Stem cell treatment has limited effect on the nuerons in the brain but they felt that some treatment was needed at the muscle end to make things link up. Hopefully this is one more small piece of the puzzle.
 
Hi - this is indeed a very legitimate study. My friend is current enrolled in the study and is about to receive the second injection. Overall - stamina and energy seems to be improved and is noticeable. The advancement of symptoms, however has not stopped and we have no way of knowing if it has slowed them down or not as no one knows the speed of the "normal" course of advancement. We are hoping that the second injection will have more noticeable improvements. VEGF is also being tested by NeuralStem in Europe, although in their study the deployment of VEGF is more invasive. With the Sangamo study it is through gene therapy that triggers the patients own body to develop VEGF. hope that helps for those who are interested in pursing it.
 
My Pals is being screened for this trial next week. All expenses are paid, there is no cost to the patient. We will keep you posted. Thank you, daybydayhealth, for your updates as well.

P.S. to daybyday: I grew up in Sunnyvale, right around the corner from Los Altos.
 
My husband is scheduled for screening for the SB-509 trial later in July. We're also looking for information from anyone who has already had the two treatments. We asked our clinic doc about it and he said it is scientifically sound in theory. A little concerned about side effects.
 
My husband passed the screening and enrolled in this study in August. Had his first dosing last month. While he doesn't necessarily feel better, I notice that his speech is a bit easier to understand. His second dosing is in 2 months.

We'd love to hear from anybody who has had their second dosing -- any improvements?

Thanks.
 
My brother was diagnosed with ALS in Feb. 2009. He was selected to participate in this study. His first series of shots were in June and his second series were taken the first week of Sept. There did not appear to be any positive results from the series of shots the progression of the disease is still very rapid. It dis not slow down at all. That is not to say the research is useless without patients like my brother willing to experiment we may never find a cure.
Jeff lives in Des Moines, IA. and has to travel to KU Med Center in Kansas City every month to draw blood. He started the study back in May and probably will not make it to the end of the study. He chosen not to vent or have feeding tubes and when I was with him this last weekend his breathing was what I would describe as a fish out of water gasping for air so he could talk.
Horrible disease is all I can say can not believe there is nothing that can be done. :neutral:
 
Sorry to hear about your brother. Thank him for being a pioneer for so many though. We are all grateful for his effort.
 
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