Congress Passes S.5 Stem Cell Research Enhancement Act

[Lorie]

First of all, I am not a supporter of Abortion. Being that I was blessed at the age of 30 with a beautiful healty baby girl. All the Doctors were telling me I couldn't have children. I also do not support Cloning. Thats why this Bill needs to be passed so there will be Federal regulations.

I also, understand there are a lot of non-supporters of this ACT. We all have our own opinions. I can appreciate that.

I am an Advocate of this Bill, Two days ago I sent 50 E-Mails to my house of Rep., My Senators and President Bush. Over a year ago I didn't even know who my Reps. were. Now they know me. By the way, My Alabama Reps. Vote No.


Congress Passes the Stem Cell Research Enhancement Act Again, Oppose a Presidential Veto
Champions and advocates of research secured another victory in the effort to expand federal support for embryonic stem cell research yesterday. The House of Representatives passed S. 5, the Stem Cell Research Enhancement Act, with strong bipartisan support, 247 to 176.
[COLOR="Blue"]In a statement following the House vote, President Bush said he will veto the bill. Tell the President that you oppose his position and urge him to reconsider

If you would like to sign up to do this go to http://www.researchamerica.org/

I will be glad to help with any questions. Just send private message.

Read Recent Article

The House-based bill would expand that pool of available cells to include those from any of the thousands of embryos that are discarded by fertility clinics each year, as long as those cells were freely donated for research by the parents. It would also impose some of the country's first ethics rules on embryo research.

Read Full Article

http://www.washingtonpost.com/wp-dyn/content/article/2007/01/11/AR2007011100251.html

Please Read. Stem cell study zeroes in on ALS cause.
http://www.msnbc.msn.com/id/18126826/

Also, before I made this post, I sent them all 50 more E-Mails. If they don't hear our voice. We will not make a difference.

Lorie

[swmn]

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. He went to Europe for a vacation - I thought he would maybe be looking for stem cell support outside the US. As I surfed about, I happened to find this stem cell therapy at what seems to be a legitimate clinic :
Please check out:


This is a clinic in NM that is using Live Umbilical stem cells from healthy births. Umbilical Stem cells are more effective than bone marrowstem cells. Does anyone know of the legitimacy of this clinic? Please advise if you have any facts on this. Thanks!:confused:

[Lorie]

Moved to a new thread under ALS/MND Research/News. To get more viewers.
Lorie

[hboyajian]

Thanks for the link. I just signed your petition.

[Paul.nagourney]

Well it seems like they put a lot of work trying to educate people about stem cells. Did you see their youtube channel? http://www.youtube.com/cellmedicine they have have some on remyelination and specific ALS studies...if anything its informative.






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. He went to Europe for a vacation - I thought he would maybe be looking for stem cell support outside the US. As I surfed about, I happened to find this stem cell therapy at what seems to be a legitimate clinic :
Please check out:



This is a clinic in NM that is using Live Umbilical stem cells from healthy births. Umbilical Stem cells are more effective than bone marrowstem cells. Does anyone know of the legitimacy of this clinic? Please advise if you have any facts on this. Thanks!:confused:

[Lorie]

I am sure they have convinced a few people. If they were curing patients with ALS it would make the world news. Not just youtube. I was reading a story a while back about a man that went over there for treatment. He died within two days of coming home.

But Hey, Lets make up our own minds!!!

Lorie

[Paul.nagourney]

Dear Lorie,

This is not a thing of "belief" or "making up our own minds". Either the stuff works or it doesnt. All I know is that Cellmedicine are the only ones who actually publish their work in peer reviewed journals.

Please, please send me any info you have about that patient you referred to. Alternatively please email to paul.nagourney@gmail.com .

You may know stem cells have already been used in ALS and published in the journal Lancet. From my understanding cellmedicine is merely offering similar procedures.

Lancet. 2004 Jul 10-16;364(9429):200-2. Links
Comment in:
Lancet. 2004 Nov 27-Dec 3;364(9449):1936-7.
Stem-cell therapy for amyotrophic lateral sclerosis.Silani V, Cova L, Corbo M, Ciammola A, Polli E.
Department of Neurology and Laboratory of Neuroscience, Dino Ferrari Centre, University of Milan Medical School-IRCCS Istituto Auxologico Italiano, Milano, Italy. Silanivincenzo@silani.com

CONTEXT: With the lack of effective drug treatments for amyotrophic lateral sclerosis (ALS), and compelling preclinical data, stem-cell research has highlighted this disease as a candidate for stem-cell treatment. Stem-cell transplantation is an attractive strategy for neurological diseases and early successes in animal models of neurodegnerative disease generated optimism about restoring function or delaying degeneration in human beings. The restricted potential of adult stem cells has been challenged over the past 5 years by reports on their ability to acquire new unexpected fates beyond their embryonic lineage (transdifferentiation). Therefore, autologous or allogeneic stem cells, undifferentiated or transdifferentiated and manipulated epigenetically or genetically, could be a candidate source for local or systemic cell-therapies in ALS. STARTING POINT: Albert Clement and colleagues (Science 2003; 302: 113-17) showed that in SOD1G93A chimeric mice, motorneuron degeneration requires damage from mutant SOD1 acting in non-neuronal cells. Wild-type non-neuronal (glial) cells could delay degeneration and extend survival of mutant-expressing motorneurons. Letizia Mazzini and colleagues (Amyotroph Lateral Scler Other Motor Neuron Disord 2003; 4: 158-61) injected autologous bone-marrow-derived stem cells into the spinal cord of seven ALS patients. These investigators reported that the procedure had a reasonable margin of clinical safety. WHERE NEXT? The success of cell-replacement therapy in ALS will depend a lot on preclinical evidence, because of the complexity and precision of the pattern of connectivity that needs to be restored in degenerating motoneurons. Stem-cell therapy will need to be used with other drugs or treatments, such as antioxidants and/or infusion of trophic molecules.

[Al]

Paul. It doesn't work. PERIOD Don't try and tell us it does. That clinic leads you to believe it is in the US and is in fact in Mexico totally unregulated.
Another get rich false hope scam. You should be ashamed.
AL.

[patricia1]

Dear Paul If anyone is interested in stem cell reaseach there is one going on in Columbia University Hosp.In NY They have a enrollment going on. That doesnt mean it will turn out to be a cure,I think it will be but only for selected people.You have to realize that you must be radiated all over to kill you immune system to except the foreign stem cell How many people in a weaken condition of aLS will be able to do that. So there are many more information on stem cell before you or anyone cansay its a cure,Please dont give anyone the wrong info Its a scam what you are saying Pat

[jimercat]

This is the same exact entity I dealt with for my husband. These people are out to suck you dry. Pat is right, you must go thru a chemo approach and various therapeutics that will end up costing you around 100K when it's all said and done.

From what I gathered when I spoke with the "doctor" that represents them in the US, is that there is a legitimate lab in phoenix that provides the cells, which is legal in US to gather cells but not use them for treatment . Thus you must go across border to Mexico or CR.

Yes I have seen the youtube nonsense - how can that be any proof whatsoever?

I do believe stem cells may be able to help ALS one day. But most "evidence" from other countries that stem cell treatment has worked is anecdotal and no proper protocols were followed to prove the patient had ALS to begin with.

If you find proof otherwise please keep us updated.

Don't mean to sound hostile - I just believe after researching this extensively, that these people are preying on the desperate and have no care other than to pad their bank accounts!!! Go ask the guys on ASLTDF forum that have already been ripped off how they are doing!!! Be prepared to be crest fallen...

[Lorie]

Thank you, AL!

Paul,
First of all, over a year ago when my Brother lived in WV, I was desperate to find something to save his Life. I found that site and E-Mailed it to his Father-In-Law. It wasn't long after that that I had read this. I then said forget it! Keep in mind I am a member of many ALS Groups and Forums. If I can recall after reading thousands of post and information on the Internet I will be glad to send it to you. I will not take away my Advocating time for ALS.

Look what was updated on their site today:

http://www.cellmedicine.com/disclaimerpage.asp


Disclaimer: Stem cell treatments offered by the Institute of Cellular Medicine (ICM) are not approved by the United States FDA or any other government agency. Stem cell treatments at ICM are in no way to be construed or presented as a cure for any condition, disease, or injury. Stem cell treatments at ICM are not a substitute for any current medical care. Consult with you physician before undertaking any medical treatment, including stem cell treatments at ICM. No guarantee of clinical benefit from ICM stem cell treatments is made or implied. Information on this website is for informational purposes only.

For the life of me. I can find all the phone numbers I want for them. But I can't find an address. They have an application you can send on-line and one you can download and fax.

Also, I happened to find this site earlier:

A Non-Profit Charitable Organization in the US.

The Health and Welness Foundation

http://www.fflt.org/index.html

Guess who is on the Executive Comittee?

Dr. Frank Morales/Dr. for The Institute of Cellular Medicine

For a $25.00 Donation they will give you a list of Practitioners affiliated with the site.

Now, Mr. Paul. Read the disclaimer they put on the site.

Either it works or it don't, RIGHT?

I think I am done for now!

Lorie:mad:

[CindyM]

Plus they charge $25 for a lost of practioners associated with them????!!! Well, this is either a money-making scheme or it isn't! No physician group I ever heard of charges for a list of affiliates. Nor do they charge for research. Enough said. Cindy

[jimercat]

Dr. Morales!!!!!!!!! The very same doc I spoke to at length!!!!!!!

Proceed at your own risk and have the pocket book wide open, better be a big one.

[Lorie]

This is from another Forum I am Involved with:

The PhD Responds,

Eden Laboratories seems to be a P.O. box in Nassau, the Bahamas (sharing the same box, actually, with other similarly named biotech concerns):

http://www.starcapital.net/contactus.html

http://www.starcapital.net/advisoryboards.htm

The self proclaimed ‘biotechnology company’ is soliciting for participants in a ‘clinical study’ which is to be performed in Belize. ALS is one of a number of diseases that is to treated in this ‘study’ – the others range from MS, various cancers, HIV, diabetes, head trauma etc. The estimated cost for the treatment are claimed to ‘run between $50,000 to $125,000 per patient, depending on the disease state . . . (etc)’. The claim is that Eden will be performing the procedures for ‘selected’ patients as a ‘non-profit effort supported, in part, by grants from the Eden foundations throughout the world’. I could find no information on the worldwide ‘Eden foundations’ nor was the level of the implied ‘in part’ financial support given.

The Chief Medical Officer on the ‘Medical Team’ associated with the ‘study’ is Mitchell J. Ghen, D.O., PhD. Information on previous efforts by Dr. Ghen in selling stem cell treatments to ALS patients can be found on our website:

http://www.als.net/treatments/reviews/reviewsarticle.asp?articleid=1634

and from a newspaper article from 2003:

http://www.parentsguidecordblood.com/ghen.html

Currently, I know of no substantiated studies demonstrating benefit from stem cell or cord blood therapeutics in ALS. A significant reason why this potential treatment is typically not available in the US – outside of a real clinical trial - is that there is no validation that it provides benefit for ALS.


John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

Lorie

[jimercat]

Thanks Lorie!!!

[Saubier]

Have you seen this: <http://www.rideforlife.com/news/als_research/marijuanalike_drugs_help_treatment_of_ne rvous_system_diseases.html>

Looks like a better treatment than riluzole, and cheaper, too.

Pappy.

[jimercat]

Hey Pappy,

I think you are probably right!:mrgreen:

For some reason mary jane just doesn't help my husband, it does the opposite. Same thing with Ambien, well almost...he would take it go to bed and then sleep walk and wierd out and wouldn't go back to bed. Funny how different drugs do different things to people.

I know mj helps some from what I've read.

As for riluzole, not worth it to my husband anyway.

[davis07]

Lets change the name of Als to aids 2. Maby then we can
get some help.

Davis

[Lorie]

Pappy I was waiting for the subject to come up about Vitamin "M". My name for it. I will say (not because i use it). It seems to be working for Tim. If anybody wants me to post some info. or PM you, just let me know! I have information!


Lorie:mrgreen:

[Lorie]

I am going to post something exactly about what you are talking about. Later this evening. Aids and all the other diseases that get so much attention and money. This post will be from something an ALS patient had written it 2002.

I will share later!!!


By the way, I Love "Ride For Life" They are some great people. They have helped us a lot.


Lorie:-D

[Lorie]

In 134 years, Why isn't there a "Cure" for ALS. Please read this Article that a PALS wrote in 2003. I totally agree!

Please Read:

http://www.rideforlife.com/archives/000412.html


How much has changed??? Rilutek was available in 1996. There is research going on, there has to be more done. It is just not enough. There is no reason why anybody in any country should have to suffer with this.

If the people don't get their Rears in Gear and put pressure on our Governments. There will not be enough done. I would hate to think that ALS still has no "Cure" in another 134 years!

Please read this, if you don't agree. Don't sign!

http://www.ipetitions.com/petition/helpfightalspetition/index.html

Lorie

[Lorie]

Links for Info:

http://www.norml.org/index.cfm?Group_ID=7002

http://www.pacifier.com/~alive/index_se_cmu.htm


Lorie

[Paul.nagourney]

Sorry I havent seen the responses that were written. Let me make myself clear.

First, why the hell should i be ashamed? I came to this wishing to learn and provided a scientific publication describing use of stem cells for ALS. Then all of a sudden i see people telling me to be ashamed ?!?!

I dont know what is about this frank gonzales or mexico..all i know is that Cellmedicine seems to be the only bloody website talking about scientific facts and having actually published some work. I just made a comment on it...thats all...why the hell would people on this blog respond in an angry manner i have no idea...

are you interested in learning about the disease or about arguing?? did you idiots see the cellmedicine youtube video on valproic acid or on remyelination or on als??? those videos must have taken a long time to make and they have no commercial interest...what they use valproic acid in timbuck too???? whatever...if people want to be so negative im never going to write anything on this site again...

Paul. It doesn't work. PERIOD Don't try and tell us it does. That clinic leads you to believe it is in the US and is in fact in Mexico totally unregulated.
Another get rich false hope scam. You should be ashamed.
AL.

[MtPockets]

The results of this "treatment" you are speaking about is, It does not work. There is no cure for ALS, period.

This is their, "OPERATIVE PROCEDURE: With the procedure of cell HLA-matching, the surgical transplant of olfactory ensheathing cells procedure by using stereotactic technique was performed on September 10, 2006. 100 µliters containing approximately 2,000,000 cells was injected into the corona radiata of the patient’s frontal lobe bilaterally based on the Flair MR imagin".

The great results for this patient who was basically paralyzed, was that she could move her tongue a little better???? And her bank account was drained to the tune of $50,000 to $100,000, just so she could move her tongue a little better. Come on now get real, face the real world. It did not cure her of anything. Is this the kind of torture you want for someone? Much less the false hope this gives to people.

This scam does not work, has not worked, and will not work, at the present time. We are all hoping and praying for a breakthrough in this research and maybe one day soon it will come. Do a search above on the search icon and enter stem cell treatment and see what you find. 100% of the people who have tried it gave their mony to people like this for what? NO results, for nothing, but to fatten someone's bank account. Some of these people in these foreign countries are not even qualified Doctors by our standards in the USA.

I'm sorry but when I see other ALS patients being sucked into these scams I really get mad. Right now they are discovering the country of China is putting poison in our dog, cat food, and now this week they found contaminants in the chicken we are buying from them. God knows what else is in the foods we are buying from them, just because businesses can buy CHEAPER foods from China than from our own farmers and manufactures.

Do you think I would trust them to open up my skull or my loved one's skull and put in some experimental stem cell that they got from a pig, sheep, goat, or whatever? NEVER.

Hey, it's your choice what you do with your money, but don't try to con other people into this false hope treatment.

As for me my money is better spent on a nice vacation with my loved ones. Something they can remember after I am gone.

God Bless
Capt AL

You are not the first to bring up this topic and obviously will not be the last. The results above were from China, but it goes the same for Mexico, Italy, etc.

When a major breakthough comes do you seriously think they will post it on "You Tube"? It says a lot when you have to post a video on "you tube" to convince people to part with their money. Why are they afraid to post it on their own website? Maybe because it's against the law and the will be arrested for fraud or something?

When you see a double blind study published in the New England Journal of Medicine, then you can begin to believe they have made some progress.

Or you see it on the front page of the news that a breakthrough has finally been found. Until then these crooks will continue to take people's money and offer false hope so they can "move their tongue a little better".

Well you said you came here to learn? Did you?

[patricia1]

I know about scams I been thru many .I went for a thing called cold laser That promised to reverse my symptoms Chiropactors use it I gave a him 3000 dollars not a thing good came of it except he probably bought himself something nice . I went of accupuncture they say they will return my nerve and muscle that was 4000 dollars .and then finally did the Eric is winning Drink Gyconutrient Had great Bowel movents 2000 dollars later GET MY DRIFT SCAM! scam! scam ! i LEARNED THE HARD WAY learn from my mistakes. When something is out there we will hear about it on the front page of the news. And about Vit M Its just a excuse to get high. What ever floats your boat. I guess if your high enough your too stupid to know or care your sick. I can get that from Xanax Thank You Pat

[Al]

Gee somebody's awfully defensive aren't they? Must have an ulterior motive for being here. Do you think he might be cursing me out and calling us idiots because we're ON to him? I really wonder about some people. I guess if he doesn't come back we're not missing much.
AL.

[Lorie]

Mr. Paul,

WE ARE NOT FOR FALSE HOPE! AND BY THE WAY, WE ARE NOT IDIOTS OR CRAZY BY NO MEANS, ARE YOU????
I want my Brother and everybody that has ALS cured. We are not going to fall for such a scam! Sorry, did you read the disclaimer they just happened to put up the day I posted my comment. Everybody on this Forum is suffering as PALS or CALS Just who do you think you are? I am working my self to exhaustion everyday to bring Awarness, Fundraising and Support for this Horrible Disease. Taking care of my Family, My Brother and everything else. First of all I highly Recommend you get some Anger Management, Maybe some Xanax!! Everyone on here is concerned about there well being. It sounds to be like you are concerned only about your self or a Company! If so, so be it! Show me any Neuro. Forum or ALS Forum that supports this!
I am involved in quite a few and haven't seen it yet. I am sure the Doctor's several of the Forums that research ALS knows more than you do!!!!

WHY DON'T YOU GO TO MEXICO AND HAVE THIS DONE, STAY THERE!! AND LEAVE US ALONE!! WE DON'T NEED YOUR HARASSMENT!!

OR YOU COULD CHOOSE TO USE THAT WAISTED ENERGY ON SOMETHING WORTHY!!

After my week already since Sunday, you are just what I needed!!

Lorie-Sister of Brother with ALS
FPALS-Friend of Patients with ALS

[MtPockets]

"Mr." Paul is not worth the stress. We all have enough of that every day of our lives just trying to survive.

Someone once said, "It is better to keep your mouth shut and have someone think you are stupid, than to open it and remove all doubt", Mr. Paul.

We have all been on here long enough to read between the lines when people like this come on trying to sale their snake oil ideas.

Either that or they just do not bother to do some research under our search icon on what all of us have gone through with these scams. We did not fall off the turnip truck yesterday.

If it walks like a duck, sounds like a duck, and smells like a duck, It's not a watermelon. :-D

Peace!
Capt. AL

[patricia1]

Dear Lorie,

This is not a thing of "belief" or "making up our own minds". Either the stuff works or it doesnt. All I know is that Cellmedicine are the only ones who actually publish their work in peer reviewed journals.

Please, please send me any info you have about that patient you referred to. Alternatively please email to paul.nagourney@gmail.com .

You may know stem cells have already been used in ALS and published in the journal Lancet. From my understanding cellmedicine is merely offering similar procedures.

Lancet. 2004 Jul 10-16;364(9429):200-2. Links
Comment in:
Lancet. 2004 Nov 27-Dec 3;364(9449):1936-7.
Stem-cell therapy for amyotrophic lateral sclerosis.Silani V, Cova L, Corbo M, Ciammola A, Polli E.
Department of Neurology and Laboratory of Neuroscience, Dino Ferrari Centre, University of Milan Medical School-IRCCS Istituto Auxologico Italiano, Milano, Italy. Silanivincenzo@silani.com

CONTEXT: With the lack of effective drug treatments for amyotrophic lateral sclerosis (ALS), and compelling preclinical data, stem-cell research has highlighted this disease as a candidate for stem-cell treatment. Stem-cell transplantation is an attractive strategy for neurological diseases and early successes in animal models of neurodegnerative disease generated optimism about restoring function or delaying degeneration in human beings. The restricted potential of adult stem cells has been challenged over the past 5 years by reports on their ability to acquire new unexpected fates beyond their embryonic lineage (transdifferentiation). Therefore, autologous or allogeneic stem cells, undifferentiated or transdifferentiated and manipulated epigenetically or genetically, could be a candidate source for local or systemic cell-therapies in ALS. STARTING POINT: Albert Clement and colleagues (Science 2003; 302: 113-17) showed that in SOD1G93A chimeric mice, motorneuron degeneration requires damage from mutant SOD1 acting in non-neuronal cells. Wild-type non-neuronal (glial) cells could delay degeneration and extend survival of mutant-expressing motorneurons. Letizia Mazzini and colleagues (Amyotroph Lateral Scler Other Motor Neuron Disord 2003; 4: 158-61) injected autologous bone-marrow-derived stem cells into the spinal cord of seven ALS patients. These investigators reported that the procedure had a reasonable margin of clinical safety. WHERE NEXT? The success of cell-replacement therapy in ALS will depend a lot on preclinical evidence, because of the complexity and precision of the pattern of connectivity that needs to be restored in degenerating motoneurons. Stem-cell therapy will need to be used with other drugs or treatments, such as antioxidants and/or infusion of trophic molecules.
Paul Columbia university in New york has just open its study on ALS and stem cells So far there is no evidence that it works yet. If you are interested call them up they will explain whats going on. Pat

[Lorie]

Thanks! Capt. AL for your words.

We all have to deal with this Disease everyday in someway. We are in tuned to what is going on in the world with ALS. I like the people on this Forum. I have made Friends with several ALS Patients. And I Love My Dear Brother with all my Heart. I tend to get Defensive when somebody messes with them.

Like with Tim: The only person I let Complain, is him!


Love Ya, Capt. AL:-D

Lorie

PS-Thank God! I don't have High Blood Pressure

Enough said by me. (for the moment).

[Lorie]

We have to join together to do something about this Disease. I think ALS Patients have waited long enough after 134 years. I am on it and have been. If any body want info. on how to help, just PM me.

With all the Forums and ALS programs I am involved in, it would amaze people just how many people have it. Here is Alabama it is amazing! I am beating Congress to death!
They will come down with a case of me, before long.(LOL)

Lorie

[MtPockets]

Lorie, I did not know if you might be able to attend the new support group meetings for MDA and ALS patients, families, and caregivers, but wanted to let you and anyone else in the area know about the time and place.
The meeting is at Memorial Hospital Classroom Number 5, on the 2nd Thursday of each month. I plan on going for my first time this coming August 9. It starts at 5pm.
If anyone else is close enough to this meeting you are invited to attend. I understand their are a couple of ALS families already going to this meeting.

I was told there will be specialties in all areas that we need to address any problems or questions we may have.

God Bless, and hope to see some of you there,
Capt AL

P. S. Just so you will know which one is me see pic: :-D

[Lorie]

Capt. AL,
Thank you for the info. MDA has started one in Mobile now. Terri the MDA Rep. in Montgomery lets me know when the meetings are scheduled. There held at USA/Knollwood Auditorium. I do appreciate you. I need all the support I can get.

You are a sweet man!

God Bless You!!

Lorie:-D

[Paul.nagourney]

Dear Lorie,

I apologize sincerely to you and everyone else i may have offended. This is a terrible disease and we all have to try to learn more...and KEEP AWAY FROM SCAMS.

The Cellmedicine folks impressed me but so what. lets finish with that topic.

I want to ask. Does anyone know of VEGF therapy for ALS? There was some rumours about this being tried in Europe.

Again, for the Cellmedicine comments...sorry...sincerely didnt want to get people arguing or hating me. I really enjoy this forum and learn alot from reading the comments posted on it.


Mr. Paul,

WE ARE NOT FOR FALSE HOPE! AND BY THE WAY, WE ARE NOT IDIOTS OR CRAZY BY NO MEANS, ARE YOU????
I want my Brother and everybody that has ALS cured. We are not going to fall for such a scam! Sorry, did you read the disclaimer they just happened to put up the day I posted my comment. Everybody on this Forum is suffering as PALS or CALS Just who do you think you are? I am working my self to exhaustion everyday to bring Awarness, Fundraising and Support for this Horrible Disease. Taking care of my Family, My Brother and everything else. First of all I highly Recommend you get some Anger Management, Maybe some Xanax!! Everyone on here is concerned about there well being. It sounds to be like you are concerned only about your self or a Company! If so, so be it! Show me any Neuro. Forum or ALS Forum that supports this!
I am involved in quite a few and haven't seen it yet. I am sure the Doctor's several of the Forums that research ALS knows more than you do!!!!

WHY DON'T YOU GO TO MEXICO AND HAVE THIS DONE, STAY THERE!! AND LEAVE US ALONE!! WE DON'T NEED YOUR HARASSMENT!!

OR YOU COULD CHOOSE TO USE THAT WAISTED ENERGY ON SOMETHING WORTHY!!

After my week already since Sunday, you are just what I needed!!

Lorie-Sister of Brother with ALS
FPALS-Friend of Patients with ALS

[Paul.nagourney]

Did I not show you the stem cell study from the Journal Lancet?????????? see below..

no you guys are all set on attacking me...and not interested in actually learning about this disease. Why praytell do you thing I am so interested?? cause a family member of mine has it .. you cold hearted person...do you not think that I suffer? that my loved one suffers?? what i go on this forum to get attention...or what sick cause would a person possibly have??

look ...forget it...im not talking about stem cells on this forum or asking questions cause its obvious: first you are all ignorant and dont read. And second you are more interested in making fun of me than actually learning. This is kind of like the move Lorenzo's Oil, where the parents go to the group and everyone in the "support group" wasnt interested in helping them.

If you would have seen the youtube videos you would have know that they were all educational...nothing about a "breakthrough"


Lancet. 2004 Jul 10-16;364(9429):200-2. Links
Comment in:
Lancet. 2004 Nov 27-Dec 3;364(9449):1936-7.
Stem-cell therapy for amyotrophic lateral sclerosis.Silani V, Cova L, Corbo M, Ciammola A, Polli E.
Department of Neurology and Laboratory of Neuroscience, Dino Ferrari Centre, University of Milan Medical School-IRCCS Istituto Auxologico Italiano, Milano, Italy. Silanivincenzo@silani.com

CONTEXT: With the lack of effective drug treatments for amyotrophic lateral sclerosis (ALS), and compelling preclinical data, stem-cell research has highlighted this disease as a candidate for stem-cell treatment. Stem-cell transplantation is an attractive strategy for neurological diseases and early successes in animal models of neurodegnerative disease generated optimism about restoring function or delaying degeneration in human beings. The restricted potential of adult stem cells has been challenged over the past 5 years by reports on their ability to acquire new unexpected fates beyond their embryonic lineage (transdifferentiation). Therefore, autologous or allogeneic stem cells, undifferentiated or transdifferentiated and manipulated epigenetically or genetically, could be a candidate source for local or systemic cell-therapies in ALS. STARTING POINT: Albert Clement and colleagues (Science 2003; 302: 113-17) showed that in SOD1G93A chimeric mice, motorneuron degeneration requires damage from mutant SOD1 acting in non-neuronal cells. Wild-type non-neuronal (glial) cells could delay degeneration and extend survival of mutant-expressing motorneurons. Letizia Mazzini and colleagues (Amyotroph Lateral Scler Other Motor Neuron Disord 2003; 4: 158-61) injected autologous bone-marrow-derived stem cells into the spinal cord of seven ALS patients. These investigators reported that the procedure had a reasonable margin of clinical safety. WHERE NEXT? The success of cell-replacement therapy in ALS will depend a lot on preclinical evidence, because of the complexity and precision of the pattern of connectivity that needs to be restored in degenerating motoneurons. Stem-cell therapy will need to be used with other drugs or treatments, such as antioxidants and/or infusion of trophic molecules.




You are not the first to bring up this topic and obviously will not be the last. The results above were from China, but it goes the same for Mexico, Italy, etc.

When a major breakthough comes do you seriously think they will post it on "You Tube"? It says a lot when you have to post a video on "you tube" to convince people to part with their money. Why are they afraid to post it on their own website? Maybe because it's against the law and the will be arrested for fraud or something?

When you see a double blind study published in the New England Journal of Medicine, then you can begin to believe they have made some progress.

Or you see it on the front page of the news that a breakthrough has finally been found. Until then these crooks will continue to take people's money and offer false hope so they can "move their tongue a little better".

Well you said you came here to learn? Did you?

[Paul.nagourney]

ohhhh isnt it ironic that when i ask a question about a therapy not to do with stem cells everyone suddenlyl goes silent? I guess my previous posting is true and you are all interested in putting down people but not having meaningful discussionl.

Well here is what I found about VEGF if anyone cares

Its being developed under the name sNN0029 by a company called Neuronova (www.neuronova.com) and below are some papers

Treatment of motoneuron degeneration by intracerebroventricular delivery of VEGF in a rat model of ALS.
Storkebaum E, Lambrechts D, Dewerchin M, Moreno-Murciano MP, Appelmans S, Oh H, Van Damme P, Rutten B, Man WY, De Mol M, Wyns S, Manka D, Vermeulen K, Van Den Bosch L, Mertens N, Schmitz C, Robberecht W, Conway EM, Collen D, Moons L, Carmeliet P
Nature Neurosci, 2005 Jan;8(1):85-92

Commentary to paper above: VEGF: multitasking in ALS.
Vande Velde C, Cleveland DW
Nat Neurosci. 2005 Jan;8(1):5-7

Blood vessels and nerves: common signals, pathways and diseases.
P Carmeliet
Nature Rev Genet, 2003 Sep;4(9):710-20

Expression of vascular endothelial growth factor and its receptors in the central nervous system in amyotrophic lateral sclerosis.
Brockington A, Wharton SB, Fernando M, Gelsthorpe CH, Baxter L, Ince PG, Lewis CE, Shaw PJ
J Neuropathol Exp Neurol, 2006 Jan;65(1):26-36

Vascular endothelial growth factor in amyotrophic lateral sclerosis and other neurodegenerative diseases.
Bogaert E, Damme PV, Van Den Bosch L, Robberecht W
Muscle Nerve, 2006 Oct;34(4):391-405




Dear Lorie,

I apologize sincerely to you and everyone else i may have offended. This is a terrible disease and we all have to try to learn more...and KEEP AWAY FROM SCAMS.

The Cellmedicine folks impressed me but so what. lets finish with that topic.

I want to ask. Does anyone know of VEGF therapy for ALS? There was some rumours about this being tried in Europe.

Again, for the Cellmedicine comments...sorry...sincerely didnt want to get people arguing or hating me. I really enjoy this forum and learn alot from reading the comments posted on it.

[CindyM]

The topic of a possible cure for ALS comes up on this forum frequently and usually generates a lot of discussion. Sometimes even heated discussion. But we are not alone in this regard. I heard on "All things Considered" that EVERY message board, regardless of how neutral the topic, has hot topics that cause members to throw darts at each other.

For example, they interviewed a woman who runs a message board related to food and eating out. She said you would think this topic is relatively free from having members errupt into anger, but no: even that board invites criticism and name-calling every time someone suggests that small children should be left with a sitter before making reservations at a fancy resturant.

Let's raise above this, people. If you have been hooked into parting with your money in order to grasp at a chance that does into yet exist, be honest and don't try to get others to do the same. If you are a salesperson hoping to part terminally ill people from their money, be ashamed. Be very ashamed. And if you want badly to believe that there is a cure, please do not flame well-meaning people who assure you that, when one is discovered, every major news outlet in the entire world will be talking about it.

We've had dissappointed and upset CALS on here before, desperate for any hope and pleading with members to "open our minds" about some cure or other. We understand your hurt and passion to find a glimmer of hope for your loved one. But the problem is not that we have closed minds. The problem is that, as of this date, no cure has been found. Those of you who are desperate for one can shoot any messengers who state this, but the facts remain. No cure as of August 2007. I am sorry. Wish we could celebrate one, but not this month.

We all of us should use our time and money more wisely. Donate to the major research centers looking for a cure. Cultivate a caring relationship with your PAL. Go out and perform a RAK (random act of kindness.) And, to all our PALS and CALS, do somehting special for yourselves this weekend.

There. End of rant. :-D Cindy

[Paul.nagourney]

:-D
I agree wholeheardly


The topic of a possible cure for ALS comes up on this forum frequently and usually generates a lot of discussion. Sometimes even heated discussion. But we are not alone in this regard. I heard on "All things Considered" that EVERY message board, regardless of how neutral the topic, has hot topics that cause members to throw darts at each other.

For example, they interviewed a woman who runs a message board related to food and eating out. She said you would think this topic is relatively free from having members errupt into anger, but no: even that board invites criticism and name-calling every time someone suggests that small children should be left with a sitter before making reservations at a fancy resturant.

Let's raise above this, people. If you have been hooked into parting with your money in order to grasp at a chance that does into yet exist, be honest and don't try to get others to do the same. If you are a salesperson hoping to part terminally ill people from their money, be ashamed. Be very ashamed. And if you want badly to believe that there is a cure, please do not flame well-meaning people who assure you that, when one is discovered, every major news outlet in the entire world will be talking about it.

We've had dissappointed and upset CALS on here before, desperate for any hope and pleading with members to "open our minds" about some cure or other. We understand your hurt and passion to find a glimmer of hope for your loved one. But the problem is not that we have closed minds. The problem is that, as of this date, no cure has been found. Those of you who are desperate for one can shoot any messengers who state this, but the facts remain. No cure as of August 2007. I am sorry. Wish we could celebrate one, but not this month.

We all of us should use our time and money more wisely. Donate to the major research centers looking for a cure. Cultivate a caring relationship with your PAL. Go out and perform a RAK (random act of kindness.) And, to all our PALS and CALS, do somehting special for yourselves this weekend.

There. End of rant. :-D Cindy

[Lorie]

Paul,
I am not angry with you. I want a "Cure" for my brother and all my other PALS friends.
I am with Cindy. We are open minded, that is one of the reasons I am so involved with ALS. Not just on this Forum. I wish we could just pull something out of the sky that heals this disease. It is not that simple. We all feel for one another. And you. I can understand you anger. We don't have to call each other names to get our attention.
We need to work together and find a way to get a cure for this disease. We can sit here and talk all day (which is nice) help me do something about it.

Sign my Petition to Support Stem Cell Research in the U.S. that could help people around the world. We have the power. Anybody from anywhere can sign it because I wan't to show Politicians all People can get ALS. It don't discriminate! See I do agree with Stem Cell Research with Guidelines.

My Petition:

http://www.ipetitions.com/petition/helpfightalspetition/index.html

Lorie

[CindyM]

Thank you Lorie, for all you do for ALS awareness. Wee need more movers and shakers like you in our community! regards, Cindy

[puzzled36]

Paul, If your relative is interested in being a part of a stem cell trial, Baylor in Texas is recruiting 150 PALS for a stem cell study. It is not fetal stem cell, its from tissue matched relatives. The aim is to stop pregression, not reverse symptoms. The down side of stem cell research and PALS is that the studies obliterate your immune system, you are in isolation 30-90 days and many PALS are not strong enough/healthy enough to be put in a neutropenic state, they do not want to be put in isolation for an extended period of time when they dont know how much time they have left,and they may or may not see any benefit. The truth is, they may hasten their death.

As for major breakthroughs and you-tube. I agree with you MtPockets that that is not the correct forum to be taken seriously. However, when there is an advancement made in the treatment or diagnosis of ALS, the headlines of your paper will also not be the first place these results will be printed. When a vaccine was found for Polio it went through two more years of testing and trial before obtaining final approval and mass public awareness. In the interum, 6000 people contracted polio. Just FYI.

G

[Lorie]

When signing my Petition. Please use first and Last name. Your info will not be given out. I am the only one who has access to the info. There is an annonomys selection on there and I can't remove it. I need real signatures. I want this to grow as much as possible. so I can start sending it to Politicians,News Media and other Organizations.

Please pass it on to people you think would sign and help with it! No stopping me!!

Thank you so much!

http://www.ipetitions.com/petition/helpfightalspetition/index.html

Lorie:-D

[Paul.nagourney]

I am trying to find the trial you told me about. Thanks for the info. It is very helpful !

At least I will look into this further.

best wishes

Paul

Plus they charge $25 for a lost of practioners associated with them????!!! Well, this is either a money-making scheme or it isn't! No physician group I ever heard of charges for a list of affiliates. Nor do they charge for research. Enough said. Cindy

[Lorie]

Good for you Paul. Maybe you will join us again. We all share information. Even when it comes to everday Life. With PALS or CALS. None of it is easy. We do the best we can.

Best of Luck!

Lorie:-D