Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi guys, I agree, it's taking too long and people don't know enough. We live in a world of sound bites. I think Charlie's CD is a great tool for educating people. I like that idea of getting full informed consent BEFORE taking the drugs. The problem is most people will not take the responsibility to get informed themselves, especially if they are not feeling well. We have to get a law passed in any state that requires full informed consent be spoon fed to the public before the drugs can be administered. That would change everything. Actually you might find a lot of family doctors getting completely informed about the drugs themselves and getting away from giving them out!! Check this site out: http://www.medicalaccountability.com/ Get it passed in any state and it will start getting passed in all states. Like a snowball effect. Jim An outright ban is an unrealistic goal in the short term, maybe ever. I'm nut sure what it is specificly that I want I just know I'm getting frustrated waiting for it. There are enough people to demand action and get it but they just aren't motivated or maybe educated to do so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi guys, I agree, it's taking too long and people don't know enough. We live in a world of sound bites. I think Charlie's CD is a great tool for educating people. I like that idea of getting full informed consent BEFORE taking the drugs. The problem is most people will not take the responsibility to get informed themselves, especially if they are not feeling well. We have to get a law passed in any state that requires full informed consent be spoon fed to the public before the drugs can be administered. That would change everything. Actually you might find a lot of family doctors getting completely informed about the drugs themselves and getting away from giving them out!! Check this site out: http://www.medicalaccountability.com/ Get it passed in any state and it will start getting passed in all states. Like a snowball effect. Jim An outright ban is an unrealistic goal in the short term, maybe ever. I'm nut sure what it is specificly that I want I just know I'm getting frustrated waiting for it. There are enough people to demand action and get it but they just aren't motivated or maybe educated to do so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi guys, I agree, it's taking too long and people don't know enough. We live in a world of sound bites. I think Charlie's CD is a great tool for educating people. I like that idea of getting full informed consent BEFORE taking the drugs. The problem is most people will not take the responsibility to get informed themselves, especially if they are not feeling well. We have to get a law passed in any state that requires full informed consent be spoon fed to the public before the drugs can be administered. That would change everything. Actually you might find a lot of family doctors getting completely informed about the drugs themselves and getting away from giving them out!! Check this site out: http://www.medicalaccountability.com/ Get it passed in any state and it will start getting passed in all states. Like a snowball effect. Jim An outright ban is an unrealistic goal in the short term, maybe ever. I'm nut sure what it is specificly that I want I just know I'm getting frustrated waiting for it. There are enough people to demand action and get it but they just aren't motivated or maybe educated to do so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. > > Hi guys, > > I agree, it's taking too long and people don't know enough. We live in a > world of sound bites. > > I think Charlie's CD is a great tool for educating people. > > I like that idea of getting full informed consent BEFORE taking the drugs. > The problem is most people will not take the responsibility to get informed > themselves, especially if they are not feeling well. We have to get a law > passed in any state that requires full informed consent be spoon fed to the > public before the drugs can be administered. That would change everything. > Actually you might find a lot of family doctors getting completely informed > about the drugs themselves and getting away from giving them out!! > > Check this site out: > http://www.medicalaccountability.com/ > > Get it passed in any state and it will start getting passed in all states. > Like a snowball effect. > > Jim > > > > > > An outright ban is an unrealistic goal in the short term, maybe > ever. I'm nut sure what it is specificly that I want I just know I'm > getting frustrated waiting for it. There are enough people to demand > action and get it but they just aren't motivated or maybe educated > to do so. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. > > Hi guys, > > I agree, it's taking too long and people don't know enough. We live in a > world of sound bites. > > I think Charlie's CD is a great tool for educating people. > > I like that idea of getting full informed consent BEFORE taking the drugs. > The problem is most people will not take the responsibility to get informed > themselves, especially if they are not feeling well. We have to get a law > passed in any state that requires full informed consent be spoon fed to the > public before the drugs can be administered. That would change everything. > Actually you might find a lot of family doctors getting completely informed > about the drugs themselves and getting away from giving them out!! > > Check this site out: > http://www.medicalaccountability.com/ > > Get it passed in any state and it will start getting passed in all states. > Like a snowball effect. > > Jim > > > > > > An outright ban is an unrealistic goal in the short term, maybe > ever. I'm nut sure what it is specificly that I want I just know I'm > getting frustrated waiting for it. There are enough people to demand > action and get it but they just aren't motivated or maybe educated > to do so. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. > > Hi guys, > > I agree, it's taking too long and people don't know enough. We live in a > world of sound bites. > > I think Charlie's CD is a great tool for educating people. > > I like that idea of getting full informed consent BEFORE taking the drugs. > The problem is most people will not take the responsibility to get informed > themselves, especially if they are not feeling well. We have to get a law > passed in any state that requires full informed consent be spoon fed to the > public before the drugs can be administered. That would change everything. > Actually you might find a lot of family doctors getting completely informed > about the drugs themselves and getting away from giving them out!! > > Check this site out: > http://www.medicalaccountability.com/ > > Get it passed in any state and it will start getting passed in all states. > Like a snowball effect. > > Jim > > > > > > An outright ban is an unrealistic goal in the short term, maybe > ever. I'm nut sure what it is specificly that I want I just know I'm > getting frustrated waiting for it. There are enough people to demand > action and get it but they just aren't motivated or maybe educated > to do so. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. > > Hi guys, > > I agree, it's taking too long and people don't know enough. We live in a > world of sound bites. > > I think Charlie's CD is a great tool for educating people. > > I like that idea of getting full informed consent BEFORE taking the drugs. > The problem is most people will not take the responsibility to get informed > themselves, especially if they are not feeling well. We have to get a law > passed in any state that requires full informed consent be spoon fed to the > public before the drugs can be administered. That would change everything. > Actually you might find a lot of family doctors getting completely informed > about the drugs themselves and getting away from giving them out!! > > Check this site out: > http://www.medicalaccountability.com/ > > Get it passed in any state and it will start getting passed in all states. > Like a snowball effect. > > Jim > > > > > > An outright ban is an unrealistic goal in the short term, maybe > ever. I'm nut sure what it is specificly that I want I just know I'm > getting frustrated waiting for it. There are enough people to demand > action and get it but they just aren't motivated or maybe educated > to do so. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 That is the sweetest news I've had all day Thanks! Jim Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 That is the sweetest news I've had all day Thanks! Jim Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 That is the sweetest news I've had all day Thanks! Jim Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 That is the sweetest news I've had all day Thanks! Jim Jim, we currently have legislation pending in NJ that should be going public(politicians LOVE me! within the next week that places that accountability on the drug companies.The first step in accountability is that the prescriber has ALL the information. Without all the information the blame just gets passed around. It's not perfect, but it's a start.Being an election year here we're getting alot of interest. As soon as it's made public I'll post it here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 , i would be pleased to help you out on the journey to making more people in the world knowledgable and sensitive to the issues we as parents face. parenting in itself is a hard job but than you mix in the effects of AS and its a whole new ballpark. please, contact me or feel free to pass my name and email addy to the folks who will give us a shot to tell our stories. sincerly, tricia smith (babytish1977@...) > > Hi Everyone, > I have spoken by email with a producer from the Montel show on 2 different emails about doing a show on the effects of Thermerisol on our children and the amazing rise in the numbers of autism in America....... > long story short they were very interested but said they could not find enough " Guest " to do the show....This being said I believe that now 3 years later would be a better time to approach them with this what we will need is at least 5 parents and their AS children to come on the show and discuss the trials and tribulations etc etc etc > I have also tried to pitch the same idea to Oprah and Dr.Phil with absolutely NO response and sent the same emails 4 times in one month > We can also get some people from the ARC of the US to talk numbers etc > the main thing would be to let everyone know what we know and to get the resources we need to better help our children > Just my own Ideas > > > > --------------------------------- > How low will we go? Check out Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 I agree. i would be happy to help out as well. On any level. That would be great just to help more people understand even if there was a way to do it not on television. Although I guess that is the most viable option for wide-range exposure. Amber > > > > Hi Everyone, > > I have spoken by email with a producer from the Montel show > on 2 different emails about doing a show on the effects of Thermerisol > on our children and the amazing rise in the numbers of autism in > America....... > > long story short they were very interested but said they could not > find enough " Guest " to do the show....This being said I believe that now > 3 years later would be a better time to approach them with this what we > will need is at least 5 parents and their AS children to come on the > show and discuss the trials and tribulations etc etc etc > > I have also tried to pitch the same idea to Oprah and Dr.Phil with > absolutely NO response and sent the same emails 4 times in one month > > We can also get some people from the ARC of the US to talk numbers etc > > the main thing would be to let everyone know what we know and to get > the resources we need to better help our children > > Just my own Ideas > > > > > > > > --------------------------------- > > How low will we go? Check out Messenger's low PC-to-Phone > call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 I’ve tried a sneaky approach - http://www.healthboards.com/boards/showthread.php?p=4074196#post4074196 "Hello I'm new to this board.. Has anyone ever used fish oil against the inflammation of RA? In high doses (like 1000mg epa/day) and alongside Vit E 400 I was pleased with the results. I then used an immune system modulator (very cheap generic in low dose) that works by boosting the endorphins and today, five months later, it's as though I don't have RA. No nasty side effects. Margaret 10.56 am 9/9/09"Margaret From: Donnelly <john@...>LDN_Users ; low dose naltrexonegroups (DOT) ComSent: Tuesday, September 8, 2009 8:09:00 PMSubject: [low dose naltrexone] Getting the word out Hi all I signed up to this forum http://www.healthboards.com/ and posted a link to Our Lovely Dr and they banned me for ever. So if any of you fancy a laugh go there and post about Dr and see how long it stays there Banned Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 You are probably right .. At least they responded to my query this time though .. see below .. You can do what we do and pay to advertise. We only accept google ads, so you can pay to advertise through google and your ads would likely show up here. There are very specific rules on how to share info, none of which you have followed. Regards, Administrator www.healthboards.com > > Hi , > > I had a look at: > http://www.healthboards.com/boards/faq.php?faq=faq_hb#faq_disclaimer > and quickly decided to not 'sell my soul' to join. > > It is my opinion they do not want your opinion. > > Jean > > **************************** > > > > I have emailed the adminstrator and asked for a vaild > > explanation .. > > > > http://www.marybradleybooks.com > > > > --- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Hi.  I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune.  He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids.  My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read?   Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is?  I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first.  I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important.   Lynn      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Hi Lynn,  How much money do you think we could raise to help Dr. G....we all need to put how much ever money we can afford to contribute toward a fund for a possible trial.  Sincerely Noel From: Lynn Capone <ecapne@...> Subject: Getting the Word Out Date: Friday, May 7, 2010, 10:18 AM  Hi.  I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune.  He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids.  My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read?   Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is?  I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first.  I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important.   Lynn      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Hi. Well, that is my question, does anyone know how much he needs?    TIA. Lynn From: Lynn Capone <ecapne (DOT) com> Subject: Getting the Word Out groups (DOT) com Date: Friday, May 7, 2010, 10:18 AM  Hi.  I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune.  He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids.  My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read?   Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is?  I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first.  I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important.   Lynn      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 I agree with you, Lynn. The community is so divided on treatment options--with some espousing DAN, others just behavioral interventions, and others . For us NOTHING works like . It's hard to know the order is which things have to come. Do you have to win over doctors to the treatment plan? Or are parents the way to go and once they start making demands of doctors, the protocol will take off? We see stories all the time on the news regarding new methods of treating disease. I watched a special last night on Bipolar Children on Discovery Health that was fascinating. Should we focus our efforts on trying to get some sort of mini documentary done about ? We certainly have some success stories, and with the encouraging results of recent viral studies, there is hard science to back up the protocol. Anyway, just some thoughts. Between the and the Stop Calling It Autism group, maybe we could have a " chat " meeting and brainstorm ideas in real time. If anyone knows someone who works in PR or radio/tv/film that would be helpful too. All the best, Robyn ________________________________ From: NOEL SCHNEIDER <schneid99@...> Sent: Fri, May 7, 2010 10:23:50 AM Subject: Re: Getting the Word Out Hi Lynn, How much money do you think we could raise to help Dr. G....we all need to put how much ever money we can afford to contribute toward a fund for a possible trial. Sincerely Noel From: Lynn Capone <ecapne (DOT) com> Subject: Getting the Word Out groups (DOT) com Date: Friday, May 7, 2010, 10:18 AM Hi. I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 I have been trying to reach parents here on the East Coast with no luck, so maybe being able to reach the doctors is best. I have no experience in the medical field or how things get done, but if anyone on the list does, I would love to hear it.... From: Lynn Capone <ecapne (DOT) com> Subject: Getting the Word Out groups (DOT) com Date: Friday, May 7, 2010, 10:18 AM Hi. I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Dear Lynn, Did Dr. Goldberg explain to you how to get the word out? Regards, 's Story - Stop Calling It Autism! http://www.stopcallingitautism.net From: ecapne@... Date: Fri, 7 May 2010 11:00:38 -0700 Subject: Re: Getting the Word Out I have been trying to reach parents here on the East Coast with no luck, so maybe being able to reach the doctors is best. I have no experience in the medical field or how things get done, but if anyone on the list does, I would love to hear it.... From: Lynn Capone <ecapne (DOT) com> Subject: Getting the Word Out groups (DOT) com Date: Friday, May 7, 2010, 10:18 AM Hi. I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 Hi. As of last night, he seemed flustered and I inferred looking for ideas. What you have heard from Dr. Goldberg? From: Lynn Capone <ecapne (DOT) com> Subject: Getting the Word Out groups (DOT) com Date: Friday, May 7, 2010, 10:18 AM Hi. I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2010 Report Share Posted May 7, 2010 > > Hi. >  > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >  > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >  > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >  >  Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >  > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >  > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >  >  > Lynn >  >  >Lynn & You both have very good ideas. I tell all I know about protocol. Most seem interested I`ve handed out info to different doctors in our area. Most I don`t think take the time to read any of this. Would love to see this happen. We have done DAN for 3 yrs. there is a lot of money to be made from all of this. It is sad how much money families have spent for the wrong treatment (us included) trying to help our children. Now going on 3 yrs. on we do feel we are on the right path now. My grandson is 11 I know it will take a long time for him. Carole  >  >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. Regards, Umesh > > Hi. >  > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >  > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >  > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >  >  Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >  > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >  > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >  >  > Lynn >  >  >  >  >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Hi,  There are some independent documentary companies like Open Eye Pictures who did this documentary about Lyme Disease patients called Under Our Skin. It's excellent. They don't seem afraid of taking on controversial subject matter and their documentaries are very sympathetic to the patients and families.  " Under Our Skin " (movie trailer)   Open Eye Pictures web site  http://www.openeyepictures.com/   PS.  My son is a patient. We live in Mass. so I took him to the NNY Autism Center. They also follow the protocol. They have neat magnetic decal for the car bumper that says " Autism is Treatable " with the phone number and web site..it's just a small effort to raise awareness. From: chocolatiluv <chocolatiluv@...> Subject: Re: Getting the Word Out Date: Friday, May 7, 2010, 10:48 PM  > > Hi. >  > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >  > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >  > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >  >  Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >  > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >  > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >  >  > Lynn >  >  >Lynn & You both have very good ideas. I tell all I know about protocol. Most seem interested I`ve handed out info to different doctors in our area. Most I don`t think take the time to read any of this. Would love to see this happen. We have done DAN for 3 yrs. there is a lot of money to be made from all of this. It is sad how much money families have spent for the wrong treatment (us included) trying to help our children. Now going on 3 yrs. on we do feel we are on the right path now. My grandson is 11 I know it will take a long time for him. Carole  >  >  > > > > > Quote Link to comment Share on other sites More sharing options...
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