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swmn

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I understand there are a lot of scams out there - which is sad. I have a dear frind who was Dx one year ago and it seems as though he is deteriorating quite quickly. Recently, He went to Europe for a vacation - I thought he would maybe be looking for stem cell support outside the US but then again, he seems to just accept his condition and do his best. I began to look into this through the internet because when I had my 2 children, each time I was asked to donate the placenta and umbilical cord - I figured 8 years later, they must have gotten somewhere with this. As I surfed about, I happened to find this stem cell therapy at what seems to be a legitimate clinic :confused: :
Please check out:



This is a clinic in NM that is using Live Umbilical stem cells from healthy births to treat multiple diseases on of which is ALS. this clinic seems legitimate - even impressive. They explain that Umbilical Stem cells are more effective than bone marrow stem cells. They do not claim to "cure ALS but show research which suppports the extension of mobility and coordination. Does anyone know of the legitimacy of this clinic? Please advise if you have any facts on this. Thanks!
 
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Al

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Very pretty website but once again no pictures or phone numbers of patients who have shown long term improvement. I think these guys are a little behind the times as well. This type experimental treatment was tried in Canada I believe and was abandoned because of not showing promise. But then the Docs here didn't get to charge 20 or 30K per treatment X's a few hundred patients before closing up shop.
AL.
 

brooksea

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swmn-

Hope your friend has mega bucks!

The treatment from what I've researched, is done across the border in Mexico or Costa Rica, as it is illegal in the US.

I have personally spoken with the doctor that offers this treatment and feel it is just another scam perpetuating false hope on the desperate. the doctor indicated that there would be multiple treatments involved. These people are connected to one of the Osmond brothers that has MS. I've been to his website when initially investigating and found that sometimes info would be on the site about this treatment and then suddenly it would be taken down. I recently threw away my notes that I took when talking to this doctor. Believe me the guy is a great salesman. And I wondered why he had so much free time to talk to me on his cell phone ( over an hour).

Please see the following discussion from ALSTDF forum, in which I asked about this:

http://www.als.net/forum/topic.asp?TOPIC_ID=1496

Please note the reply from the research scientist at ALSTDF and in particular Wayne.

Don't mean to dash your hopes, but only want to prevent unnecessary heartache.

CJ
 

swmn

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thanks so much for your guidance. I am really struggling with the wrath of ALS on my friend. I appreciate your kind & informative responses. I was surprized that the link remained, being less than legitimate... I just really want my friend - as well as all of you - to be blessed with more time - more quaity time. :(
I pray every day for all of you who are challenged w/ ALS
 

Al

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Thought I'd leave it alone while checking it out and waiting for some feed back. It's gone. No point in leaving it there for some unsuspecting soul to find and not read all the poop on it and go heading off to NM with a bag of cash in their hand.
AL.
 

CindyM

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If anybody has a bag of cash at the ready I'd like to recommend a great beach or two where we can all have a nice meet-up! Money better spent than on some of these fake treatment's I'd say! Cindy
 

zac111

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i would have to say that they are not advanced enough in stem cell research right now to cure als with it but one day i believe that the cure lies in stem cells,i read an article in a newspapper that a little girl about 3 years old had an incurable type pf cancer and was given embryotic stemcells and the cancer dissappered in 3 months,an incredible story.
 

subway

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Hi to all:
I am new here and I am glad that I find this helpful website. My grandma, 73 years old was diagnosed with ALS in last May. I love my grandma and I wish I could do anything for her. I can search lots of treatment for ALS in the website. But the more I found, the more confused I was. I am not sure which one is really effective and which one is fraud.
Also I read an article related cells treatment for ALS at this website

I am quite interested in this program. I wonder if anybody here can give advices. Thank you
Subway
 
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Al

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Hi subway. Welcome to our site. You only need to post your message here once. I removed the link from your post because it didn't work. Sorry. There is no cure for ALS. I am sorry for that. Any site or person that tells you there is, is either lying to you or is going to sell you a worthless treatment. I have not seen one person get any more than a few months of benefit from stem cell treatment. Some day it may work but now it does not. It costs from 20 to 50 thousand US dollars for maybe 3 months benefit. Save your money and use it to have as much time as you can with your grandma while she is still able to do things.
AL.
 

subway

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Hi Al,
Thank you for your kind remind. I also think it might not be smart to take my grgandma to there for this risky procedure.
Sometiems I can't help thinking why it happened to my grandma? She is so wonderful a lady! I deadly miss the cookies she baked for us . Do you think are there any ways can stop ALS or make her feel a little bit better?
Thank you again!
Subway
 

Lorie

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Treatments

There are people with slow progression like my brother Timothy. But, I have not found one person yet, cured from ALS. He just took Rilutek for two weeks and stopped. He became nausious all the time!

Your right AL,

Don't waste the money. Some people are trying to convince Timothy into taking Herbals, he has taken some. I don't agree with it. Show me an ALS patient healed from Herbal Remedies?


Lorie:(
 

CindyM

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You get the scammers trying to make a buck and you get well-meaning friends and family who say things like, "Gee, you are losing muscle. You should exercise more." Nobody wants to think that there is nothing we can do except accept the reality and live life to our fullest.

The best thing is to learn all you can about the disease so you can make informed choices. Cindy
 

patricia1

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Stem cell

If anyone is interested There is a trial going on at Columbia University Hospital in New York City with stem cell and ALS .It is not a scam its real I called to be in the study.I cant wait around to die. I am not saying it is a cure or a treatment Just a research study on stem cell ALS people There is a protocol I have to see if I meet the qualifications and it may be closing soon to the public when they have enough people So yes there are wonderful things going on out there its just a matter of time. Hang in and God Bless Us All Pat
 

CindyM

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Thank you Patricia. I hope you get to be part of the research. It goes without saying that there is a big difference between a clinic and research center associated with a major university or hospital vs some "clinic" run by a single doctor out of a store-front. For one thing, I bet the university won't charge you your life's savings. good luck and keep us informed! regards, Cindy
 

hboyajian

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I think that if you are part of a legitimate research study, all treatments and checkups that they do are paid for. There should be no cost for someone participating as a patient. After all, there is no guarantee that the treatment will work, and most likely in the case of ALS the researchers are just trying to learn more in moving toward an eventual effective treatment. Good luck with getting into the study.
 
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