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Helpingmum....

Please don't take what you are told about stem cell personal, everyone is looking out for your best interest. Most think, the money would be better spent on getting items to comfort her life better, but that's our opinion.

We appreciate what you are doing for her, we are all grasping at straws.

I have a company that is fixing to open business in India. There are absolutely NO regulations. MY COO was there 2 weeks ago and an Indian told him a very interesting fact... He told him..."India is a TRUE democracy..anybody can do whatever they want here...WHATEVER..." India is a really dirty place, while the people are very good people and actually some of the best people i have ever met, there is so much poverty that the the many streets are slums, it stinks the sewage due to no waste treatement. There is so much poverty there, i feel terrible for those people, we employ about 500 of them overseas, they work for $800 - $1,200 per month, which is like making $20,000 a month here and it's a crying shame. Some there will do anything for money.

They are allowed exploratory stem cell treatement (good ones), but also hoax stem cell.

All we ask, is please be careful, we don't want you to get hurt, but in the same breath, i thank your mom for taking the risk, someone has to try these things to see if they work.

If you need us, we are here.

Also, please tell you mom, NOT to drink the water unless it's bottled. Use NO ice and get NO drinks from a fountain or a machine. You may find this funny, but my COO had a 9 hour plane ride home and spent 7 hours of it on the toilet....I lauged at him,but it couuld have been serious, he was so careful with his water and merely got a cup of coffee out of the vending machine in the British Airways Buisness Lounge on the way out...... Something like this could kill a PALS.

Rgds,

Jamie
 
To helping Mum and anyone else who thinks we should be more "open" to alternative ideas: please stop and ask just a few basic questions. I would want to know:
  1. how much does it cost?
  2. is it covered by insurance?
  3. do you have to pay for a list of referrals?
  4. is the treatment associated with an actual acredited hospital?
  5. has it been done in more than one country?
  6. does your als clinic know about this treatment?

If the answer to any of these questions is "no" then I would ask why not?" This isn't an issue of being "open" and "loving." This is an issue of common sense.

Let's guit beating this dead horse. If you have a bucket of money to throw at somebody workign out of a store-front "clinic" then by all means, do so. Just please quit bragging to us that you have money to throw away. Most people here are trying to buy equipment because they have a disease for which there is no cure. Not yet. Not this month. Nowhere in the world.

So go. Take your treatment. And call us with the results. Maybe you will be able to say "I told you so." I hope so for the sake of everyone affected with this incurable disease. Cindy
 
Stem Cells

I support helpingmum ! It great to see someone else get in trouble for talking about stemcells.

by the way, this paper seems like an important breakthrough providing rationale for stem cell therapy....but if it was only that easy...i wish there was more we can do besides argue when someone shares stories....

Nat Neurosci. 2007 May;10(5):615-22. Epub 2007 Apr 15. Links
Comment in:
Nat Neurosci. 2007 May;10(5):535-7.
Astrocytes expressing ALS-linked mutated SOD1 release factors selectively toxic to motor neurons.Nagai M, Re DB, Nagata T, Chalazonitis A, Jessell TM, Wichterle H, Przedborski S.
Department of Neurology, Columbia University, 710 West 168th Street, New York, New York 10032, USA.

Mutations in superoxide dismutase-1 (SOD1) cause a form of the fatal paralytic disorder amyotrophic lateral sclerosis (ALS), presumably by a combination of cell-autonomous and non-cell-autonomous processes. Here, we show that expression of mutated human SOD1 in primary mouse spinal motor neurons does not provoke motor neuron degeneration. Conversely, rodent astrocytes expressing mutated SOD1 kill spinal primary and embryonic mouse stem cell-derived motor neurons. This is triggered by soluble toxic factor(s) through a Bax-dependent mechanism. However, mutant astrocytes do not cause the death of spinal GABAergic or dorsal root ganglion neurons or of embryonic stem cell-derived interneurons. In contrast to astrocytes, fibroblasts, microglia, cortical neurons and myocytes expressing mutated SOD1 do not cause overt neurotoxicity. These findings indicate that astrocytes may play a role in the specific degeneration of spinal motor neurons in ALS. Identification of the astrocyte-derived soluble factor(s) may have far-reaching implications for ALS from both a pathogenic and therapeutic standpoint.
 
"i wish there was more we can do besides argue when someone shares stories...."

We are not arguing with anyone. We are presenting a view for their consideration and information, based on the experiences and results of various members over years of seeking help.

You both are new to this forum, so to speak, and do not know the extent and experience our members have had over years of dealing with themselves and loved one's seeking help by any means possible, and sometimes losing their hard earned money and hope with treatments and programs that have just not shown any lasting benefit. Just as the one story I quoted where they had a slight increase in tongue movement. Big deal!

We love and care for our members and do not want to see anyone hurt by the scammers out there. Stem Cell treatment may one day offer some effect to help ALS patients, but currently it has failed.

By the way Mr. Paul, how many of our people have any idea what you just said in your post? We are victims of ALS, not research scientists.

At least communicate to us on our level.

Thank You
Capt. AL
 
MtPockets said:
By the way Mr. Paul, how many of our people have any idea what you just said in your post? We are victims of ALS, not research scientists.

At least communicate to us on our level.

Thank You
Capt. AL
Al, aside from a 2 or 3 technical terms (eg. Bax-dependent) I had no trouble reading the abstract. I thinks lots of the forum members would understand the gist of it.
 
"Nat Neurosci. 2007 May;10(5):535-7.
Astrocytes expressing ALS-linked mutated SOD1 releasefactors selectively toxic to motor neurons."

Astrocytes (also known collectively as astroglia) are characteristic star-shaped glial cells in the brain. They perform many functions, including the formation of the blood-brain barrier, the provision of nutrients to the nervous tissue, and play a principle role in the repair and scarring process in the brain. (from Wikipedia.)

This article isn't talking about stem cell applications for ALS, it's talking about astrocytes and their effect on the degeneration of motor nuerons. The mention of embryonic stem cell interneurons and their resistance to the astrocytes does not mean stem cell therapy is ready for patients.

No one is denying that stem cell therapy may be the way to go for future PALS, but until clinical research is established with identifiable parameters we will have no way of knowing for sure at this point in time.

I wish anyone well that is brave enough to take on stem cell therapy and that is wealthy enough to buy all the protocols that go along with it. I truly hope that their goal of getting better is met. But I'm not holding my breath.
 
Fantastic !

Great ! Now we are talking. Lets not argue about things we have no control over...there are charlatans who come across as such and there are charlatans in lab coats that pry on us through the guise of science and legitimacy.

Let us share experiences both positive and negative so that collectively as a group we may learn.

The "rationale" I was talking about was that since astrocytes seem to be responsible...at least in some form...and since bone marrow stem cells can become astrocytes ...well maybe in the future...there is some rationale...

children with Krabbe disease in which the microglia dont metabolize certain chemicals have been shown to benefit from cord blood stem cell therapy...maybe in the future it will be possible to use such methods to replace astrocytes...

im sorry i shouldnt have said rationale since that word is too strong..

let us think together and learn together so that we may demand of our scientists to do the right research that will actually help our loved ones as opposed to lining their own pockets...this is what i meant by charaltans in lab coats...how much money gets put into research every year and how little progress we actually see...

lets all stand up to ALL CHARLATANS and try to make a difference for ourselves and our loved ones..

THINK. We know know all 30000 genes that make a human. We know now all the cells. We know have animal models of every disease. The problem currently is not lack of knowledge but how to put everything together.

jimercat said:
"Nat Neurosci. 2007 May;10(5):535-7.
Astrocytes expressing ALS-linked mutated SOD1 releasefactors selectively toxic to motor neurons."

Astrocytes (also known collectively as astroglia) are characteristic star-shaped glial cells in the brain. They perform many functions, including the formation of the blood-brain barrier, the provision of nutrients to the nervous tissue, and play a principle role in the repair and scarring process in the brain. (from Wikipedia.)

This article isn't talking about stem cell applications for ALS, it's talking about astrocytes and their effect on the degeneration of motor nuerons. The mention of embryonic stem cell interneurons and their resistance to the astrocytes does not mean stem cell therapy is ready for patients.

No one is denying that stem cell therapy may be the way to go for future PALS, but until clinical research is established with identifiable parameters we will have no way of knowing for sure at this point in time.

I wish anyone well that is brave enough to take on stem cell therapy and that is wealthy enough to buy all the protocols that go along with it. I truly hope that their goal of getting better is met. But I'm not holding my breath.
 
OK but aren't we talking about two different things? Stem cell research holds hope for a number of conditions. But I thought this thread was talking about places that promise improvement, possibly even implying a cure, through therapy and treatment. I react strongly to the idea of treatment with a method that is still in the research stages. And early research, at that. Cindy
 
Cindy,

You are correct and thanks for bringing us back to topic!

Research is ongoing but the human guinea pig has many places to go. I just hope that PALS are not harmed in the process.
 
My point exactly. Paul is quoting scientific studies documented in real research labs by people with real credentials and published in respectable medical journals. Not some unnamed hospital in some foreign country with nowhere the controls we have in first world countries.
AL.
 
I heard that in India, they have best resources for stem cell treatment

Hello Everyone,

Thanks for posting that there is a hope. My Mom is been suffering for almost two years. She is in India, my family has tried best to get as much help to her with all kind of treatments except Stem Cell. I would like to know more about it and if it is impoving let us know. I would like to try it for Mom. People who are bashing about services in India should shut there mouth because they are lot advance in technology and medical researchs and they give best affordable services. India produces highest doctors, programer and engineers by so far in the world. Thanks. :)
 
I just received my copy of the MDA/ALS Newsletter and this issue has an article about stem cell research. It says, and I quote "An intravenous infusion of umbilical cord cells significantly extended the life span of SOD1 mice, which have an ALS-like disease, as well as prolonged their motor function and decreased bio-chemical evidence of inflammation".

Maybe they are starting to get somewhere with this stem cell thing. I certauinly hope so.
Gordon
 
Ok shaneh. First. Do NOT EVER tell me to shut my mouth. You come here the first time and start mouthing off about something you know nothing about. I did not and will not critisise the Indian people. I tell about clinics that give false hope and take peoples money giving false hope. Show me proof that stem cells work in humans right now. There is none. Not in any country in the world. I lived in Brampton for almost 30 years. It has one of the largest Indian populations outside India. You don't have to tell me of their abilities. I would ask that you respect other view points and not take this as an attack on the Indian people.

AL.
 
I do sincerley hope this works for her mom. This could be the breakthrough that we have been hoping and praying for.

There is no need to be harsh to anyone willing to go to the extremes to educate us and share with us their experiences.

I would like to know how her mother is doing after the procedure.

Take care,
 
Get Off His Back!

First of all,
I come here for the moral support. I do not believe for ONE minute that Al would be trashing something that he did not believe may conclude to a scam......Jesus Christ the man has ALS dont you think that he would be the first to be on the bandwagon for a cure. I am sure that if he didn't go and take the time to take all the bullshit that comes through here to already suck us dry of what funds that we do have, then everyone would ***** about that.................For Gods Sake

We should ALL be grateful for all that he does. As a Cals I don't know where he even gets the energy to do any of this...........

Just an opinion! And I am opinionated.............I am a redhead!
He is just looking out for his own..............

If anyone is interested about that kind of stuff, there is a pm button......

Sorry about the language but after IKE I have other things to gripe about!
netty
 
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