Congress Passes S.5 Stem Cell Research Enhancement Act

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Lorie

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We Have To Join Together!

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

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Support Group Meeting In Gulfport,Ms

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

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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
 
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Stem Cells for ALS

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.


Lorie said:
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
 
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im suffering but your more interested in attacking than learning

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. [email protected]

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.




MtPockets said:
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?
 
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VEGF all of a sudden everyone shuts up

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




Paul.nagourney said:
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

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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
 
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Amen to that !

:-D
I agree wholeheardly


CindyM said:
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

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Paul

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

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

puzzled36

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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

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Request

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
 
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thank you for the info on baylor stem cell trial

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

CindyM said:
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

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Good for you Paul

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
 
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