Bruce
12-27-2001, 07:43 PM
This is not intended to be a report of any dramatic discovery that just appeared in the news or it does mot include all areas of research. I reseached this for two days and found a web site sponsered by The Association of thw British PharmaceuticalIndustry and found two areas that biotechnology companies in the UK have focused on as their most promising areas for finding a cure for Parkinsons.
One was research on growth factors. Their goal is to find a substance that would repair damaged dopamine neurons or reverse the progression of pd.
The second area od research is gene therapy. Their goal is to use special methods to insert a gene into non dividing cells (dopamine neurons) and the gene would cause the neurons to produce specific proteins that would lead to the production of dopamine.
Their are companies doing research in these two areas at the present time. Their is no asurance that this will result in a cure and their are no short cuts. It will take severai years.
Bruce
One was research on growth factors. Their goal is to find a substance that would repair damaged dopamine neurons or reverse the progression of pd.
The second area od research is gene therapy. Their goal is to use special methods to insert a gene into non dividing cells (dopamine neurons) and the gene would cause the neurons to produce specific proteins that would lead to the production of dopamine.
Their are companies doing research in these two areas at the present time. Their is no asurance that this will result in a cure and their are no short cuts. It will take severai years.
Bruce
Sponsor
Googy
12-28-2001, 12:18 AM
Thanks Bruce,you found the info.
Googy
Googy
Bernie812
12-28-2001, 01:47 AM
Bruce,
The Amgen phase II study that finished up in August was on a product(NIL-A)in a drug category called neuroimmunophilins. This product is now being tested in humans to see if it can regenerate nerve cells and thus slow, stop or reverse PD. In early clinical development this product had tremendous potential. My MDS told me that when the research was presented to a group of PD specialist, they were blown away. The beauty of this product is that it can be administered in the form of a pill. It also is very effective at getting through the blood-brain barrier, something that has knocked out other medications in the past. In fact this was the problem in the early usage of levadopa.
Now the bad news........the results of the phase II study showed the product to well tolerated, but it only produced substantial results on motor skills for a small number of study participants. Amgen has since walked away from the study and returned the rights to the original developer, Guilford Pharmaceuticals. Guilford has stated that they intend to continue development of the product, but I don't believe they have the cash necessary to conduct a big phase III study on their own. They may in fact decide to test the drug on a totally different disease.
There are many questions being asked by PLWP about this phase II study that have yet to be answered. Was it long enough (6 months)? Did they use the right dosages? Was the study group too small (600)?.........
My MDS feels it wasn't given enough time. As she put it, "We're talking about re-growth here. That may take 8 months or a year. Who knows." The real tragedy here is that until Guilford has the cash or a partner, the products potential is on hold. And we continue to wait. Oh....my MDS did tell me that one of her patients in the study got noticeably worse after coming off the study.
You can probably tell I'm venting a little here, Bruce, and I apologize if this is old news to you. Every time I read something about PD research it sets me off. From the point that the researcher identifies a potential drug compound to market takes over ten years. They don't even talk in terms of millions, but now it's a billion dollars. It's absurd and the entire sytem needs to be overhauled. There needs to be more support and incentives for these companies to be able to test these novel drugs. The FDA also must do their part and streamline the governments involvement in the process. Well I've said enough....I originally intended to share a little info on nerve growth, but all this came out. All these great minds working on break-through discoveries, and the process to get the product to those that need it gets worse.
To finish up.....today I fired off an email to CNBC. I asked them why they always talk about the business aspect of a drug trial and not the human side. I also asked why they don't ever mention the real losers in this worsening process, us. I used the phase II Amgen study as a perfect example. Let's see if they respond.
Bernie812
The Amgen phase II study that finished up in August was on a product(NIL-A)in a drug category called neuroimmunophilins. This product is now being tested in humans to see if it can regenerate nerve cells and thus slow, stop or reverse PD. In early clinical development this product had tremendous potential. My MDS told me that when the research was presented to a group of PD specialist, they were blown away. The beauty of this product is that it can be administered in the form of a pill. It also is very effective at getting through the blood-brain barrier, something that has knocked out other medications in the past. In fact this was the problem in the early usage of levadopa.
Now the bad news........the results of the phase II study showed the product to well tolerated, but it only produced substantial results on motor skills for a small number of study participants. Amgen has since walked away from the study and returned the rights to the original developer, Guilford Pharmaceuticals. Guilford has stated that they intend to continue development of the product, but I don't believe they have the cash necessary to conduct a big phase III study on their own. They may in fact decide to test the drug on a totally different disease.
There are many questions being asked by PLWP about this phase II study that have yet to be answered. Was it long enough (6 months)? Did they use the right dosages? Was the study group too small (600)?.........
My MDS feels it wasn't given enough time. As she put it, "We're talking about re-growth here. That may take 8 months or a year. Who knows." The real tragedy here is that until Guilford has the cash or a partner, the products potential is on hold. And we continue to wait. Oh....my MDS did tell me that one of her patients in the study got noticeably worse after coming off the study.
You can probably tell I'm venting a little here, Bruce, and I apologize if this is old news to you. Every time I read something about PD research it sets me off. From the point that the researcher identifies a potential drug compound to market takes over ten years. They don't even talk in terms of millions, but now it's a billion dollars. It's absurd and the entire sytem needs to be overhauled. There needs to be more support and incentives for these companies to be able to test these novel drugs. The FDA also must do their part and streamline the governments involvement in the process. Well I've said enough....I originally intended to share a little info on nerve growth, but all this came out. All these great minds working on break-through discoveries, and the process to get the product to those that need it gets worse.
To finish up.....today I fired off an email to CNBC. I asked them why they always talk about the business aspect of a drug trial and not the human side. I also asked why they don't ever mention the real losers in this worsening process, us. I used the phase II Amgen study as a perfect example. Let's see if they respond.
Bernie812
Pelicangirl
12-28-2001, 02:40 AM
Hi Bernie,
I agree with you 100 percent. I've been hearing 10 years for a cure now for over 10 years and still no cure.
My feeling is that if you get any reply from CNBC at all that it will be a generic, form letter. I guess I'm venting too!!
------------------
Pelicangirl (aka Ruth)
[This message has been edited by Pelicangirl (edited 12-28-2001).]
I agree with you 100 percent. I've been hearing 10 years for a cure now for over 10 years and still no cure.
My feeling is that if you get any reply from CNBC at all that it will be a generic, form letter. I guess I'm venting too!!
------------------
Pelicangirl (aka Ruth)
[This message has been edited by Pelicangirl (edited 12-28-2001).]
Bruce
12-28-2001, 10:08 AM
Bernie, no need to apologize for anything, because I can understand your frustration,
Yes, I am familiar with the group of drugs you mentioned and they are another source for a cure.This is just my opinion, based on my experience, but it is true that funds have a big impact on what types of drugs are tested and which ones, Industry is influenced by the profit motive and I doubt if anything we say will change the situation.
So that leaves the federal government. I believe that Parkinsons research is very under funded and the people who allocate the funds are influenced by politics.
As an example, consider HIV research. It impacted many people and most people assumed, if they contracted the disease, it was quickly fatal. I remember a woman who had HIV gave a speech at one of the political partie's conventions. Gradually, the average citizen begain to realize it could infect you or me.
Their has been a lot of money allocated for a cure for HIV research, which means more research groups began studying this disease. I can also remember when it wasn't known what caused HIV.
The result is their have been enormous strides in HIV research and it won't be long before their is a cure.
Contrast that with the attention pd gets and the result is the research is under funded. The public's view of pd is it is just a chronic disease found in old people and they think no one will die if they are diagnosed with pd, Of course, we know pd is not just a disease of old people, and people do die from complications from having pd.
So with limited funds, the researchers have to make choices on which drug looks like it is the most promising and , being human, the wrong drug might be deleted.
Research takes a lot of patience and many failed studies to find a cure. It's like a baby learning to walk. The baby first learns to crawl and, after many falls, the baby persists and starts taking a few steps, and than the baby gets to that crucial point and walks. The baby is still a little wobbly and has some set backs (falls) but never gives up until he is free and walking like everyone else.
It will be the same thing with pd research, many studies, many failures, but if we all persist and never give up, that elusive cure will come some day. I don't see a quick cure yet, but I am certain it will come some day,
Bruce
Yes, I am familiar with the group of drugs you mentioned and they are another source for a cure.This is just my opinion, based on my experience, but it is true that funds have a big impact on what types of drugs are tested and which ones, Industry is influenced by the profit motive and I doubt if anything we say will change the situation.
So that leaves the federal government. I believe that Parkinsons research is very under funded and the people who allocate the funds are influenced by politics.
As an example, consider HIV research. It impacted many people and most people assumed, if they contracted the disease, it was quickly fatal. I remember a woman who had HIV gave a speech at one of the political partie's conventions. Gradually, the average citizen begain to realize it could infect you or me.
Their has been a lot of money allocated for a cure for HIV research, which means more research groups began studying this disease. I can also remember when it wasn't known what caused HIV.
The result is their have been enormous strides in HIV research and it won't be long before their is a cure.
Contrast that with the attention pd gets and the result is the research is under funded. The public's view of pd is it is just a chronic disease found in old people and they think no one will die if they are diagnosed with pd, Of course, we know pd is not just a disease of old people, and people do die from complications from having pd.
So with limited funds, the researchers have to make choices on which drug looks like it is the most promising and , being human, the wrong drug might be deleted.
Research takes a lot of patience and many failed studies to find a cure. It's like a baby learning to walk. The baby first learns to crawl and, after many falls, the baby persists and starts taking a few steps, and than the baby gets to that crucial point and walks. The baby is still a little wobbly and has some set backs (falls) but never gives up until he is free and walking like everyone else.
It will be the same thing with pd research, many studies, many failures, but if we all persist and never give up, that elusive cure will come some day. I don't see a quick cure yet, but I am certain it will come some day,
Bruce
Googy
12-28-2001, 07:28 PM
Yes
I agree with all of you.I dont have to tell you how many years we have been waiting.I think I posted on the PLWP.I would like to see a cure in our life time.Today is my birthday.That slipped in.How ever Bill doesnt know it is.
Googy
I agree with all of you.I dont have to tell you how many years we have been waiting.I think I posted on the PLWP.I would like to see a cure in our life time.Today is my birthday.That slipped in.How ever Bill doesnt know it is.
Googy
Bruce
12-28-2001, 09:07 PM
HAPPY BIRTHDAY GOOGY!
A member of the PLWP forum sent me some information, and you know me, I have been searchng the net, but I am not up to type much.
Here is some info.I located. One company is working on delivering drugs through the nose. Their was enough info. to confirm it works very well. The advantagea arw more of the pd drug is absorbed into the blood stream, fewer side effects, and a lower dose can be used.
Another company uses a special method to allow mote drugs to crose the blood-brain barrier and to enter the cells more easily.
I have found an excellent site that goes into detail about how the dopamine neurons die and the drugs that prevent it, but it is a long article. Another step, Googy.
Bruce
A member of the PLWP forum sent me some information, and you know me, I have been searchng the net, but I am not up to type much.
Here is some info.I located. One company is working on delivering drugs through the nose. Their was enough info. to confirm it works very well. The advantagea arw more of the pd drug is absorbed into the blood stream, fewer side effects, and a lower dose can be used.
Another company uses a special method to allow mote drugs to crose the blood-brain barrier and to enter the cells more easily.
I have found an excellent site that goes into detail about how the dopamine neurons die and the drugs that prevent it, but it is a long article. Another step, Googy.
Bruce
Bernie812
12-29-2001, 01:10 PM
Bruce,
There are some things in the works that may help. The link below is one study that may help. Perry Cohen's FDA Initiative is another.
If anyone read my original post here, I'm sorry. That was so badly written I had to take it out.
No response from CNBC, yet.
Bernie812
See: biocomparecom/news.asp?id=3609
www.acurian.com (http://www.acurian.com)
[This message has been edited by Bernie812 (edited 12-30-2001).]
There are some things in the works that may help. The link below is one study that may help. Perry Cohen's FDA Initiative is another.
If anyone read my original post here, I'm sorry. That was so badly written I had to take it out.
No response from CNBC, yet.
Bernie812
See: biocomparecom/news.asp?id=3609
www.acurian.com (http://www.acurian.com)
[This message has been edited by Bernie812 (edited 12-30-2001).]
Googy
12-29-2001, 05:49 PM
Bruce and Bernie,
I went to the site for the clinical trials.There are ten trials in California which surprised me.But couldnt get the info.Netscape said the "Requested URL wasn't found on this server." But one was Loma Linda Hospital is near my daughter.What is so strange, Thursday we took Bill to the V.A Loma Linda hospital .Close by there. He now has a card for the V.A doctors. Small world.Maybe something will come of this !! What Is this I"m thinking. "One small step for mankind. "
Googy
I went to the site for the clinical trials.There are ten trials in California which surprised me.But couldnt get the info.Netscape said the "Requested URL wasn't found on this server." But one was Loma Linda Hospital is near my daughter.What is so strange, Thursday we took Bill to the V.A Loma Linda hospital .Close by there. He now has a card for the V.A doctors. Small world.Maybe something will come of this !! What Is this I"m thinking. "One small step for mankind. "
Googy
Lory
01-01-2002, 10:57 AM
Originally posted by Bruce:
This is not intended to be a report of any dramatic discovery that just appeared in the news or it does mot include all areas of research. I reseached this for two days and found a web site sponsered by The Association of thw British PharmaceuticalIndustry and found two areas that biotechnology companies in the UK have focused on as their most promising areas for finding a cure for Parkinsons.
One was research on growth factors. Their goal is to find a substance that would repair damaged dopamine neurons or reverse the progression of pd.
The second area od research is gene therapy. Their goal is to use special methods to insert a gene into non dividing cells (dopamine neurons) and the gene would cause the neurons to produce specific proteins that would lead to the production of dopamine.
Their are companies doing research in these two areas at the present time. Their is no asurance that this will result in a cure and their are no short cuts. It will take severai years.
BruceWhat an excellen discussion board, lots of good info. Please keep it all coming. Congrat's on the VA, googy. Many of my friends in ham radio are also vets, and the OHSU site in Portland, OR has been beneficial tothem. lory
This is not intended to be a report of any dramatic discovery that just appeared in the news or it does mot include all areas of research. I reseached this for two days and found a web site sponsered by The Association of thw British PharmaceuticalIndustry and found two areas that biotechnology companies in the UK have focused on as their most promising areas for finding a cure for Parkinsons.
One was research on growth factors. Their goal is to find a substance that would repair damaged dopamine neurons or reverse the progression of pd.
The second area od research is gene therapy. Their goal is to use special methods to insert a gene into non dividing cells (dopamine neurons) and the gene would cause the neurons to produce specific proteins that would lead to the production of dopamine.
Their are companies doing research in these two areas at the present time. Their is no asurance that this will result in a cure and their are no short cuts. It will take severai years.
BruceWhat an excellen discussion board, lots of good info. Please keep it all coming. Congrat's on the VA, googy. Many of my friends in ham radio are also vets, and the OHSU site in Portland, OR has been beneficial tothem. lory
Googy
01-01-2002, 05:38 PM
Lory good to see you.Next time I go to my daughter in Washington will send you a message on here.She works at Portland University.*** .to the dean of business.Our nurse hasn't come back yet.I was there in Oct.just for three days.Do hope you are doing better.
Googy
Googy
Lory
01-04-2002, 08:29 AM
Originally posted by Googy:
Lory good to see you.Next time I go to my daughter in Washington will send you a message on here.She works at Portland University.*** .to the dean of business.Our nurse hasn't come back yet.I was there in Oct.just for three days.Do hope you are doing better.
Googy
Hi, yep, I'm doing better. Got the "collar" off yesterday, and can move my neck really well. Have PT starting Monday, but hope I can progress to home routine soon, as I have to meet my deductible before insurance will pay the 80%. And, best news, I get to resume my deep water aerobics class - will start in February, really miss the routine and the group. How do you get to your daughter's? If you drive, would love to meet you for coffee or snack. Or at least a phone call - it's so hard to hear a person's voice over the internet.
Lory
Lory good to see you.Next time I go to my daughter in Washington will send you a message on here.She works at Portland University.*** .to the dean of business.Our nurse hasn't come back yet.I was there in Oct.just for three days.Do hope you are doing better.
Googy
Hi, yep, I'm doing better. Got the "collar" off yesterday, and can move my neck really well. Have PT starting Monday, but hope I can progress to home routine soon, as I have to meet my deductible before insurance will pay the 80%. And, best news, I get to resume my deep water aerobics class - will start in February, really miss the routine and the group. How do you get to your daughter's? If you drive, would love to meet you for coffee or snack. Or at least a phone call - it's so hard to hear a person's voice over the internet.
Lory