Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 Are we any closer to having trials on kids using these immune modulators? Just curious about the progress on this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 I've recently heard that a few other doctors are recommending a product called Moducare for immune modulation. Anyone know about this or know if Dr. G has an opinion about it? Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 , I don't have answers to your questions, but rather would like to add to your post in hopes someone in the know will reply. I recently had a phone consult with Dr. Goldberg and he mentioned there was some good news recently with " the plan " and that he was praying that if things went well that in several months the immune modulators would become a reality. Having vague information myself, I asked how certain he was if these immune modulators would be the answers for all the children suffering from autism. He was positive they would. When I asked further how he knew (for example it had been tried on some kids and been proven successful) he said it had not but he just was that certain. I'm sure I'm showing my medical ignorance and am in now way wanting to challenge Dr. Goldberg, but I like you, would like more info. If someone who has a good understanding of this is on the list...please tell me where to read or who to call. Thanks, > I would like to know if the research is going to be funded for the Immune Modulators. Who are the researchers? Where are they looking for the Money? Answers have been so vague. What exactly is happening? I hear things like " if we all pitch in... " What exactly does this mean? Two million dollars is a lot of money. I'm sure most of us are spending our last dollars on medicine, telephone/office visits and travel. > > When things are so vague, one begins to wonder if there is anything actually going on. I assume people from the coalition are reading on this list. If not, how do I contact them? Every since we started with , those mystery Immune Modulators have been hanging out there like a carrot. I appreciate the efforts of others, as I am not able to give money or time. (I have two kids and feel I would be a patient if tested.) I just want to know what is going on. > > Thank You so much > Little > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Here's a post from 2003 .iT's a reply to me the subject was immune modulators/ defensive medicine ..it should be of interest here ...The main theme of posts here are direct abx treatment , but it's clear to me that AB'x's will only ever be partially effective ..at some point the IS will need to kick in to finish the job ..Can the IS kick in or is it too stressed? Is the anergy we display too profound ...I believe that Immune modulators are an essential part of treatment ... any comments ... From: Nick Date: 4/1/2003 Time: 6:31:04 PM Remote Name: 66.74.176.15 Comments , I don't know about those mushroom extracts - I tried one a few years back called MGN-3 which seemed to have good studies behind it but the results were disappointing. One of the more promising over-the-counter immunostimulants in my opinion is ImmKine which contains an absorbable form of muramyl dipeptide (bacterial cell wall). It makes you sleep long and deep if nothing else. http://www.pharmacynaturelle.com/html/immkine.html The best FDA approved immunostimulant is probably GM-CSF GM-CSF abstracts http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui ds=11728053 & dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui ds=11590502 & dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui ds=11992286 & dopt=Abstract There is also IL-2, although this is more complicated because it seems IL-2 (in higher doses) can actually cause or make infections worse according to the monograph, and the PEG-Il2 is not approved. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui ds=11465947 & dopt=Abstract Other countries such as Russia Germany have many more immune stimulants to choose from - not much in the US. About defensive medicine, the very good antifungal FK-463 has been approved in Japan for some time now and it is possible to buy it from an internet pharmacy, but no doctor in USA will administer the injections because of the legal ramifications. And the FDA is too conservtive and takes too long to approve new drugs. Many people like me would rather take a calculated risk that we either recover or die from the side effect of a drug fighting to get well, rather than do nothing and wait to die a slow painful death over years or decades. But the FDA makes the choice for us by failing to approve drugs fast enough ,and driving up the cost to pharmaceutical companies trying to get new drugs approved to astronomical levels. -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.338 / Virus Database: 267.10.13/78 - Release Date: 19/08/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 A modulator can either: (A) Supress the immune system or ( Stimulate the immune system The post you cite clearly refers to stimulating the immune system. It seems to me, in my case any way, I first needed to (selectively) supress the immune system (to quell the inflammation) THEN simulate the immune system... and just getting sequestered bugs infront of the antibody signalling cells can do that (and that's what I was hoping to do). I think you're friend is talking about stimulating the immune system- but I'd think there'd have to be bugs present and vunerable to make that effective? Comments? Barb > > Here's a post from 2003 .iT's a reply to me the subject was immune > modulators/ defensive medicine ..it should be of interest here ...The main > theme of posts here are direct abx treatment , but it's clear to me that > AB'x's will only ever be partially effective ..at some point the IS will > need to kick in to finish the job ..Can the IS kick in or is it too > stressed? Is the anergy we display too profound ...I believe that Immune > modulators are an essential part of treatment ... any comments ... > > From: Nick > > Date: 4/1/2003 > Time: 6:31:04 PM > Remote Name: 66.74.176.15 > Comments > , I don't know about those mushroom extracts - I tried one a few years > back called MGN-3 which seemed to have good studies behind it but the > results were disappointing. One of the more promising over-the- counter > immunostimulants in my opinion is ImmKine which contains an absorbable form > of muramyl dipeptide (bacterial cell wall). It makes you sleep long and deep > if nothing else. > http://www.pharmacynaturelle.com/html/immkine.html > The best FDA approved immunostimulant is probably GM-CSF GM-CSF abstracts > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_ui > ds=11728053 & dopt=Abstract > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_ui > ds=11590502 & dopt=Abstract > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_ui > ds=11992286 & dopt=Abstract > There is also IL-2, although this is more complicated because it seems IL-2 > (in higher doses) can actually cause or make infections worse according to > the monograph, and the PEG-Il2 is not approved. > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_ui > ds=11465947 & dopt=Abstract > Other countries such as Russia Germany have many more immune stimulants to > choose from - not much in the US. > About defensive medicine, the very good antifungal FK-463 has been approved > in Japan for some time now and it is possible to buy it from an internet > pharmacy, but no doctor in USA will administer the injections because of the > legal ramifications. And the FDA is too conservtive and takes too long to > approve new drugs. Many people like me would rather take a calculated risk > that we either recover or die from the side effect of a drug fighting to get > well, rather than do nothing and wait to die a slow painful death over years > or decades. But the FDA makes the choice for us by failing to approve drugs > fast enough ,and driving up the cost to pharmaceutical companies trying to > get new drugs approved to astronomical levels. > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.338 / Virus Database: 267.10.13/78 - Release Date: 19/08/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Penny , Its assumed that with so called auto immune diseases the IS does work overtime ...But that's not the case...with us the IS does work overtime but but the important distinction is it responds in the wrong mode ...Without a presenting antigen [stealth] the IS is pushed into an inappropriate response ...wound response rather than attack response ..the inflammation is way beyond an IS reaction ..its a runaway self sustaining monster..that's why ARB's are an essential part of therapy ..they control the chain reaction ,within a reasonable amount of time things should return to normal as with me & ...job done ..return to maintenance dose ...That's if the engine [infection ]pushing the reaction is not too powerful...Just to speculate, now you are taking antifungals you are responding to ARb's ...Now, I wonder.!!!.. -----Original Message-----From: infections [mailto:infections ]On Behalf Of penny Sent: 19 August 2005 21:49infections Subject: [infections] Re: Immune modulators , that's presupposing that the immune system isn't already working overtime. We have all kinds of evidence of overactive immune systems. All of these so called "AutoImmune diseases" claim that the immune system is overactivated and is supposedly "attacking" the body, resulting in the AI disease dx. Inflammation is an immune system response with destructive results, even leading to cancer as has shown in his angiotensin II/ARB research.I'm not suggesting that we don't need to help our immune systems do the job, but the question is how do we best do that? penny<Jaep@L...> wrote:...The main> theme of posts here are direct abx treatment , but it's clear to me that> AB'x's will only ever be partially effective ..at some point the IS will> need to kick in to finish the job ..Can the IS kick in or is it too> stressed? Is the anergy we display too profound ...I believe that Immune> modulators are an essential part of treatment ... any comments ...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Penny ,you wrote “Back to the Immune System. Can we really say that the IS is responding incorrectly? Isn't it also possible that it's doing the best it's capable of doing, under the circumstances? Hey, we're not dead yet, right?” Yes we can say the IS is not responding correctly. As you point out we should be in a life or death struggle with our infection ..the IS does not come out all guns blazing , it’s a measured staged response , We are denied the more extreme IS reaction by the stealth nature of our infection , the messages that instructs the IS to upgrade to serious attack mode are never made. .And yes we aint dead ..a dead host is no good as a meal ticket , It’s the combined effect of various immune down regulation measures that’s keeping us ill. But no measure is 100%. ..So the IS is doing the best it can it’s just that it aint good enough… Couple this with the known effect of chronic infection of “anergy” lessening response to infection over time… that’s stealth or otherwise …But as The IS is staged, layered we should be able to outmanoeuvre this situation by artificially elevating the IS to the next level , bringing new fresh components from our IS ..that’s not boosting but switching on the IS…The many who report an overall improvement when contracting other infections ,colds & the like would seem to support the hypothesis Anyway that’s how I see it. And don’t worry is battling away there for us , he’s given presentations to some of the best medical brains in the UK ..Were they impressed ..Oh yes, .. it looks like trails are the next step ..That is for Cancer patients … -----Original Message-----From: infections [mailto:infections ]On Behalf Of penny Sent: 20 August 2005 02:34infections Subject: [infections] Re: Immune modulatorsHi , I'm not following you exactly. I always responded to the ARB. Believe me I wouldn't have stuck with Benicar for over a year if I weren't seeing a very big positive response. I still feel very strongly that it changed my life as far as most of my symptoms. But only the antibiotics have helped with the fatigue. And now, perhaps the anti-fungal is also helping with the fatigue although I can't say for sure since I haven't done it as a stand alone therapy as I have with abx. I do think the Diflucan is helping, but then again, I was off the Dif. for almost a month without any reduction of energy so I'm still not certain how much it has impacted my improvement. It's more like a gut feeling. (Believe me, I take so many pills that I don't take anything anymore unless I really think it's either helping or has a very good chance of helping me.)Back to the Immune System. Can we really say that the IS is responding incorrectly? Isn't it also possible that it's doing the best it's capable of doing, under the circumstances? Hey, we're not dead yet, right? I wonder why the medical establishment tends to blame our bodies rather than the pathogens? Maybe because from the day we're born, we begin to die, so there's an inherent kind of hopelessness?The problem is, I think, that there's a lot of residual damage when the body puts up a fight. I mean super high fevers are an appropriate Immune System response that can give people brain damage. Inflammation leads to heart disease, cancer, etc. These are unfortunate side effects of the immune system responding to any kind of threat, not just wounds. It's the way we're made to respond. Perhaps the threats to the I.S. are just getting worse? And maybe we've helped the threat by creating an environment for bugs to thrive? i.e. diet, misuse of antibiotics, etc. And sure, perhaps some genetic predispostion is at work as well.That's why I think we have to look at helping our immune system but that doesn't necessarily mean boosting it, which is what most people think when they hear "immune modulation". I get frustrated because I keep forgetting that the majority of people still don't even contemplate, let alone understand the role bacteria is probably playing in most of these "unexplained" illnesses. On the CFS forums, mycoplasma gets mentioned once in a while. Lyme gets mentioned occasionally, I rarely hear anything about c. pneumonia, and if you mention staph you're pretty much laughed off the forum. So in general, infection is pretty much ignored. Really frustrating, because I've got so much evidence that it's just the opposite. I firmly believe that you will find chronic infections of all types underlying almost every one of these diseases of unknown origin, and yet people are still talking about protein drinks and boosting their immune systems (against what, they don't know). :-( At least there are researchers who are gaining prominence who do see the connection between the immune response and the bugs. Hopefully, that awareness will shift to the CFS and AI communities soon. penny > ...The main> > theme of posts here are direct abx treatment , but it's clear to> me that> > AB'x's will only ever be partially effective ..at some point the> IS will> > need to kick in to finish the job ..Can the IS kick in or is it too> > stressed? Is the anergy we display too profound ...I believe that> Immune> > modulators are an essential part of treatment ... any> comments ...> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 That can also be re-worded to say " the immune system isn't responding the way WE want it to respond. In fact, it's quite likely it's responding the way the PATHOGEN wants it to respond. Hense- smart modulation - what ever weapon you choose. Barb wrote: Yes we can say the IS (immune system) is not responding correctly > > ...The main > > > theme of posts here are direct abx treatment , but it's clear > to > > me that > > > AB'x's will only ever be partially effective ..at some point > the > > IS will > > > need to kick in to finish the job ..Can the IS kick in or is > it too > > > stressed? Is the anergy we display too profound ...I believe > that > > Immune > > > modulators are an essential part of treatment ... any > > comments ... > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 I just don't agree. I think our immune systems are fighting really hard, and fairly effectively, considering what they're dealing with, and that's why we are chronically ill rather than having up and died or gotten cancer, or diabetes, or ALS or some other disease that kills you, although at the rate I've been going, I may be close to being a good candidate for cancer. Many of us are at risk for a number of these illnesses if we just give it time. But actually the point is moot. If I could boost my immune system eneough to kill all these bugs, that would be fine, as long as it didn't kill me too. What I don't understand is why there's not way more attention being paid to what the immune system is trying to fight. We need way more attention and time devoted to understanding our foe, so that our inadequacies won't become our downfall. penny > > ...The main > > > theme of posts here are direct abx treatment , but it's clear > to > > me that > > > AB'x's will only ever be partially effective ..at some point > the > > IS will > > > need to kick in to finish the job ..Can the IS kick in or is > it too > > > stressed? Is the anergy we display too profound ...I believe > that > > Immune > > > modulators are an essential part of treatment ... any > > comments ... > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 That's more like it, Barb. OR the pathogen has learned how to use our immune systems against us, while we don't bother learning much about the pathogens at all. penny " Barb Peck " <egroups1bp@y...> wrote: > That can also be re-worded to say " the immune system isn't > responding the way WE want it to respond. In fact, it's quite likely it's responding the way the PATHOGEN wants it to respond. > > Hense- smart modulation - what ever weapon you choose. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 Exactly Barb..Well thinking about it perhaps not quite exactly ...It's more than likely that the IS is pushed the way the pathogen wants it to respond ..that's the nub of the problem! we could re-word yet again to " The IS isn't working in the way it works against other [none stealth] pathogens" .. -----Original Message-----From: infections [mailto:infections ]On Behalf Of Barb PeckSent: 21 August 2005 00:40infections Subject: [infections] Re: Immune modulatorsThat can also be re-worded to say " the immune system isn't responding the way WE want it to respond. In fact, it's quite likely it's responding the way the PATHOGEN wants it to respond.Hense- smart modulation - what ever weapon you choose.Barb wrote:Yes we can say the IS (immune system) is not responding correctly> > ...The main> > > theme of posts here are direct abx treatment , but it's clear> to> > me that> > > AB'x's will only ever be partially effective ..at some point> the> > IS will> > > need to kick in to finish the job ..Can the IS kick in or is> it too> > > stressed? Is the anergy we display too profound ...I believe> that> > Immune> > > modulators are an essential part of treatment ... any> > comments ...> > >> >> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 Exactly right again.. proving some pathogens are smarter than others (and us humans). Barb > > > ...The main > > > > theme of posts here are direct abx treatment , but it's > clear > > to > > > me that > > > > AB'x's will only ever be partially effective ..at some point > > the > > > IS will > > > > need to kick in to finish the job ..Can the IS kick in or is > > it too > > > > stressed? Is the anergy we display too profound ...I believe > > that > > > Immune > > > > modulators are an essential part of treatment ... any > > > comments ... > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 I agree with you, Penny about this post. The question I have is why on this list, isn't anyone playing with probiotics more? After a year of antibiotics and over time having some really serious reactions to them in terms of pain and arthritis, I have found that taking kefir about two hours after antibiotics, or yogurt plus extra water makes such a huge difference, I can't describe. I found a yogurt maker at a thrift store for $2. The cost of organic milk is about all I end up having to pay for the best tasting yogurt ever. Gonna try making kefir this week as the grains were dehydrated and now growing but not ready yet. For me, kefir works better than yogurt, but yogurt is better than nothing. *S* > > > ...The main > > > > theme of posts here are direct abx treatment , but it's > clear > > to > > > me that > > > > AB'x's will only ever be partially effective ..at some > point > > the > > > IS will > > > > need to kick in to finish the job ..Can the IS kick in or > is > > it too > > > > stressed? Is the anergy we display too profound ...I > believe > > that > > > Immune > > > > modulators are an essential part of treatment ... any > > > comments ... > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 About cancer... Omura found that there is no cancer without a heavy metal deposit nearby. Get the metals out - no cancer. *S* > > > > ...The main > > > > > theme of posts here are direct abx treatment , but it's > > clear > > > to > > > > me that > > > > > AB'x's will only ever be partially effective ..at some > > point > > > the > > > > IS will > > > > > need to kick in to finish the job ..Can the IS kick in > or > > is > > > it too > > > > > stressed? Is the anergy we display too profound ...I > > believe > > > that > > > > Immune > > > > > modulators are an essential part of treatment ... any > > > > comments ... > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 I am just glad to hear that finally there will be some research available. In a message dated 26/09/2009 17:09:52 GMT Daylight Time, lforman@... writes: Dr G did not tell me what - just that it is coming out and hes very excited about it. I'm sure he's under a strict confidentiality agreement so he could not say what. Laureen On Sep 25, 2009, at 10:58 AM, Argie Olivo <_golivo@..._ (mailto:golivo@...) > wrote: > Laureen, what kind of research is coming out in October? > On Sep 24, 2009, at 1:21 PM, Laureen Forman wrote: > >> I think it’s a great idea but, there must be a lot of public atten >> tion >> brought to to this that maybe we will get after the research >> comes out >> in October. Perhaps there will be a lot of attention paid and public >> outcry >> which will then get governmental dollars that can be given to labs >> to study >> this. Kinda like with AIDS. >> >> Because of all of the attention that AIDS got – there is MASSIVE >> government >> funding for AIDS related projects. I know people who work in labs >> and it’s >> a known fact that in order to $$ you must be studying something AIDS >> related >> and most labs do because there is funding for it. That’s why its’ >> such a >> shame that things like HHV6 and other viral issues are not getting >> studies >> because there is a lack of funding. >> >> However, it’s not that it can’t be done – it could and then you >> could grant >> money to labs to study this. >> >> Laureen >> >> On 9/24/09 10:49 AM, " Robyn & Greg Coggins " <_rngcoggs@..._ (mailto:rngcoggs@...) > >> wrote: >> >>> >>> >>> >>> >>> Me, too! >>> >>> ____________ ____ ____ >>> From: Kristy Nardini <_knardini@roadrunnerknar_ (mailto:knardini@...) >>> <mailto:knardini%mailto:knardimai> > >>> _@..._ (mailto: ) <mailto:%mailto:%<Wmai> ; >>> _office@neuroimmunedoffic_ (mailto:office@...) <mailto:office%mailto:office%<Wmai> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>> Subject: RE: Immune Modulators >>> >>> I think it's a great idea, but I think it first has to be proven >> that >>> is a 'real' disease. >>> >>> 1000s are still dying from AIDS in African countries, if I'm not >> mistaken >>> ;-( >>> >>> Kristy >>> >>> From: groups (DOT) com [mailto:@ From: @yaho >> Behalf Of Lynn >>> Capone >>> Sent: Tuesday, September 22, 2009 6:21 AM >>> groups (DOT) com; office@neuroimmuned r.com >>> Subject: Immune Modulators >>> >>> Dear fellow parents. >>> >>> I had an idea and wanted to check with other parents to see what >> they >>> think.. A lot of us on this group are using Imunovir because the >> medical >>> community has failed us and has not admitted/paid attention to the >> fact that >>> our kids being diagnosed with autism are not the same as cases of >> autism >>> years ago due to neuroimmune disease. We do not have the appropriate >>> medicine to adequately treat our children. >>> >>> I was thinking about attention was paid to those who were/are >> suffering from >>> AIDS. Over the years, although I am not an expert, it seems like >> great >>> strides have been made in the treatment of this disease and unless >> I am >>> wrong, the fatality rate is much lower than when this disease >> first arrived >>> on the scene. I know that there are probably a lot of nonprofit >> foundations >>> that over the years have raised money for research. For a lot of >> reasons, >>> money was poured into this research. With all due respect to anyone >>> suffering from AIDS, why can't this happen for our kids? >>> >>> My question for this group is what if we created a Neuroimmune >> Foundation, >>> nonprofit where we can get the word out and raise money for >> research? It may >>> take time to be as sucessful as other nonprofits, but is it worth >> trying?Can >>> we use similiar tactics? Does anyone know how to do this? >>> >>> I don't know anything about how to run a nonprofit or what made >> the AIDS >>> research so sucessful, but I would be open to being a part of >> doing what we >>> can so that we can raise money. >>> >>> I am not sure if this is a crazy idea, but please let me know what >> you >>> think. >>> >>> Thank-you. >>> >>> Lynn >>> >>> [Non-text portions of this message have been removed] >>> >>> [Non-text portions of this message have been removed] >>> >>> [Non-text portions of this message have been removed] >>> >>> >>> >>> >>>> >> >> [Non-text portions of this message have been removed] >> >> > > > > [Non-text portions of this message have been removed] > > > > ------------ ---- ---- - > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute, the Parent Coalition, > or the list moderator(s) > Links > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I hope you are corrrect, his office is unsure about anything coming up? We have been waiting such a long time for these immune modulators, that would be such a blessing for us all..... Â Sincerely Noel >> >>> >>> >>> >>> >>> Me, too! >>> >>> ____________ _________ _________ __ >>> From: Kristy Nardini <knardini@roadrunner .com >>> <mailto:knardini% 40roadrunner. com> > >>> groups (DOT) com <mailto:% 40groups. com> ; >>> office@neuroimmuned r.com <mailto:office% 40neuroimmunedr. com> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>> Subject: RE: Immune Modulators >>> >>> I think it's a great idea, but I think it first has to be proven >> that >>> is a 'real' disease. >>> >>> 1000s are still dying from AIDS in African countries, if I'm not >> mistaken >>> ;-( >>> >>> Kristy >>> >>> From: groups (DOT) com [mailto:] On >> Behalf Of Lynn >>> Capone >>> Sent: Tuesday, September 22, 2009 6:21 AM >>> groups (DOT) com; office@neuroimmuned r.com >>> Subject: Immune Modulators >>> >>> Dear fellow parents. >>> >>> I had an idea and wanted to check with other parents to see what >> they >>> think.. A lot of us on this group are using Imunovir because the >> medical >>> community has failed us and has not admitted/paid attention to the >> fact that >>> our kids being diagnosed with autism are not the same as cases of >> autism >>> years ago due to neuroimmune disease. We do not have the appropriate >>> medicine to adequately treat our children. >>> >>> I was thinking about attention was paid to those who were/are >> suffering from >>> AIDS. Over the years, although I am not an expert, it seems like >> great >>> strides have been made in the treatment of this disease and unless >> I am >>> wrong, the fatality rate is much lower than when this disease >> first arrived >>> on the scene. I know that there are probably a lot of nonprofit >> foundations >>> that over the years have raised money for research. For a lot of >> reasons, >>> money was poured into this research. With all due respect to anyone >>> suffering from AIDS, why can't this happen for our kids? >>> >>> My question for this group is what if we created a Neuroimmune >> Foundation, >>> nonprofit where we can get the word out and raise money for >> research? It may >>> take time to be as sucessful as other nonprofits, but is it worth >> trying?Can >>> we use similiar tactics? Does anyone know how to do this? >>> >>> I don't know anything about how to run a nonprofit or what made >> the AIDS >>> research so sucessful, but I would be open to being a part of >> doing what we >>> can so that we can raise money. >>> >>> I am not sure if this is a crazy idea, but please let me know what >> you >>> think. >>> >>> Thank-you. >>> >>> Lynn >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I don't like surprises..... From: schneid99@... Date: Mon, 28 Sep 2009 11:51:49 -0700 Subject: Re: Immune Modulators I hope you are corrrect, his office is unsure about anything coming up? We have been waiting such a long time for these immune modulators, that would be such a blessing for us all..... Sincerely Noel >> >>> >>> >>> >>> >>> Me, too! >>> >>> ____________ _________ _________ __ >>> From: Kristy Nardini <knardini@roadrunner .com >>> <mailto:knardini% 40roadrunner. com> > >>> groups (DOT) com <mailto:% 40groups. com> ; >>> office@neuroimmuned r.com <mailto:office% 40neuroimmunedr. com> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>> Subject: RE: Immune Modulators >>> >>> I think it's a great idea, but I think it first has to be proven >> that >>> is a 'real' disease. >>> >>> 1000s are still dying from AIDS in African countries, if I'm not >> mistaken >>> ;-( >>> >>> Kristy >>> >>> From: groups (DOT) com [mailto:] On >> Behalf Of Lynn >>> Capone >>> Sent: Tuesday, September 22, 2009 6:21 AM >>> groups (DOT) com; office@neuroimmuned r.com >>> Subject: Immune Modulators >>> >>> Dear fellow parents. >>> >>> I had an idea and wanted to check with other parents to see what >> they >>> think.. A lot of us on this group are using Imunovir because the >> medical >>> community has failed us and has not admitted/paid attention to the >> fact that >>> our kids being diagnosed with autism are not the same as cases of >> autism >>> years ago due to neuroimmune disease. We do not have the appropriate >>> medicine to adequately treat our children. >>> >>> I was thinking about attention was paid to those who were/are >> suffering from >>> AIDS. Over the years, although I am not an expert, it seems like >> great >>> strides have been made in the treatment of this disease and unless >> I am >>> wrong, the fatality rate is much lower than when this disease >> first arrived >>> on the scene. I know that there are probably a lot of nonprofit >> foundations >>> that over the years have raised money for research. For a lot of >> reasons, >>> money was poured into this research. With all due respect to anyone >>> suffering from AIDS, why can't this happen for our kids? >>> >>> My question for this group is what if we created a Neuroimmune >> Foundation, >>> nonprofit where we can get the word out and raise money for >> research? It may >>> take time to be as sucessful as other nonprofits, but is it worth >> trying?Can >>> we use similiar tactics? Does anyone know how to do this? >>> >>> I don't know anything about how to run a nonprofit or what made >> the AIDS >>> research so sucessful, but I would be open to being a part of >> doing what we >>> can so that we can raise money. >>> >>> I am not sure if this is a crazy idea, but please let me know what >> you >>> think. >>> >>> Thank-you. >>> >>> Lynn >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I have not gotten the impression the immune modulators will be available in October, only research about (that may eventually lead to the availability of medication to help). Kristy From: [mailto: ] On Behalf Of NOEL SCHNEIDER Sent: Monday, September 28, 2009 11:52 AM Subject: Re: Immune Modulators I hope you are corrrect, his office is unsure about anything coming up? We have been waiting such a long time for these immune modulators, that would be such a blessing for us all..... Sincerely Noel >> >>> >>> >>> >>> >>> Me, too! >>> >>> ____________ _________ _________ __ >>> From: Kristy Nardini <knardini@roadrunner .com >>> <mailto:knardini% 40roadrunner. com> > >>> groups (DOT) com <mailto:% 40groups. com> ; >>> office@neuroimmuned r.com <mailto:office% 40neuroimmunedr. com> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>> Subject: RE: Immune Modulators >>> >>> I think it's a great idea, but I think it first has to be proven >> that >>> is a 'real' disease. >>> >>> 1000s are still dying from AIDS in African countries, if I'm not >> mistaken >>> ;-( >>> >>> Kristy >>> >>> From: groups (DOT) com [mailto:] On >> Behalf Of Lynn >>> Capone >>> Sent: Tuesday, September 22, 2009 6:21 AM >>> groups (DOT) com; office@neuroimmuned r.com >>> Subject: Immune Modulators >>> >>> Dear fellow parents. >>> >>> I had an idea and wanted to check with other parents to see what >> they >>> think.. A lot of us on this group are using Imunovir because the >> medical >>> community has failed us and has not admitted/paid attention to the >> fact that >>> our kids being diagnosed with autism are not the same as cases of >> autism >>> years ago due to neuroimmune disease. We do not have the appropriate >>> medicine to adequately treat our children. >>> >>> I was thinking about attention was paid to those who were/are >> suffering from >>> AIDS. Over the years, although I am not an expert, it seems like >> great >>> strides have been made in the treatment of this disease and unless >> I am >>> wrong, the fatality rate is much lower than when this disease >> first arrived >>> on the scene. I know that there are probably a lot of nonprofit >> foundations >>> that over the years have raised money for research. For a lot of >> reasons, >>> money was poured into this research. With all due respect to anyone >>> suffering from AIDS, why can't this happen for our kids? >>> >>> My question for this group is what if we created a Neuroimmune >> Foundation, >>> nonprofit where we can get the word out and raise money for >> research? It may >>> take time to be as sucessful as other nonprofits, but is it worth >> trying?Can >>> we use similiar tactics? Does anyone know how to do this? >>> >>> I don't know anything about how to run a nonprofit or what made >> the AIDS >>> research so sucessful, but I would be open to being a part of >> doing what we >>> can so that we can raise money. >>> >>> I am not sure if this is a crazy idea, but please let me know what >> you >>> think. >>> >>> Thank-you. >>> >>> Lynn >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Thank you.... Â Sincerely Noel >> >>> >>> >>> >>> >>> Me, too! >>> >>> ____________ _________ _________ __ >>> From: Kristy Nardini <knardini@roadrunne r .com >>> <mailto:knardini% 40roadrunner. com> > >>> groups (DOT) com <mailto:% 40groups. com> ; >>> office@neuroimmuned r.com <mailto:office% 40neuroimmunedr. com> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>> Subject: RE: Immune Modulators >>> >>> I think it's a great idea, but I think it first has to be proven >> that >>> is a 'real' disease. >>> >>> 1000s are still dying from AIDS in African countries, if I'm not >> mistaken >>> ;-( >>> >>> Kristy >>> >>> From: groups (DOT) com [mailto:] On >> Behalf Of Lynn >>> Capone >>> Sent: Tuesday, September 22, 2009 6:21 AM >>> groups (DOT) com; office@neuroimmuned r.com >>> Subject: Immune Modulators >>> >>> Dear fellow parents. >>> >>> I had an idea and wanted to check with other parents to see what >> they >>> think.. A lot of us on this group are using Imunovir because the >> medical >>> community has failed us and has not admitted/paid attention to the >> fact that >>> our kids being diagnosed with autism are not the same as cases of >> autism >>> years ago due to neuroimmune disease. We do not have the appropriate >>> medicine to adequately treat our children. >>> >>> I was thinking about attention was paid to those who were/are >> suffering from >>> AIDS. Over the years, although I am not an expert, it seems like >> great >>> strides have been made in the treatment of this disease and unless >> I am >>> wrong, the fatality rate is much lower than when this disease >> first arrived >>> on the scene. I know that there are probably a lot of nonprofit >> foundations >>> that over the years have raised money for research. For a lot of >> reasons, >>> money was poured into this research. With all due respect to anyone >>> suffering from AIDS, why can't this happen for our kids? >>> >>> My question for this group is what if we created a Neuroimmune >> Foundation, >>> nonprofit where we can get the word out and raise money for >> research? It may >>> take time to be as sucessful as other nonprofits, but is it worth >> trying?Can >>> we use similiar tactics? Does anyone know how to do this? >>> >>> I don't know anything about how to run a nonprofit or what made >> the AIDS >>> research so sucessful, but I would be open to being a part of >> doing what we >>> can so that we can raise money. >>> >>> I am not sure if this is a crazy idea, but please let me know what >> you >>> think. >>> >>> Thank-you. >>> >>> Lynn >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 >I have been thinking a lot about how best to start a non-profit, what our mission statement would be, and what our first goal might look like. I have come up with a definite short term goal that would not only raise awareness but also maybe some money for research. The first thing that would need to get done besides paper work would be to establish a board of directors. These people would be in charge of regulating and setting up the by-laws for the non-profit. I have a friend that is a lawyer and he could help me do all of the paper work. I think it would be a good thing to make it a corporation and to get a tax exempt status. I think one of our goals should be to raise awareness. One of the biggest ways to do that is to talk about the statistics involved with a diagnoses of the " A " word. I think if we not only talk about but also what will happen to all of these kids if they don't get better we might get more attention. I recently went to an art exhibit by an artist named Jordan. His art work is a mix of social commentary and statistics. If we could get him to do some art work based on statistics and the " A " word and do an auction were all the proceeds go to our non-profit we could raise money and awareness at the same time. My husband is an event planner and I know he could get the event done for little or no cost. We also have friends in the industry and could maybe get some celebrities to come, which hopefully means press too. I would love to get feedback from any parents that think this is a good or bad idea. It will take more than one person to make this happen and would love to know who would be interested in taking this on. I would need volunteers for the board and also parents who are good at getting all the research and numbers together. Amber > Me, too! > > > > > ________________________________ > From: Kristy Nardini <knardini@...> > ; office@... > Sent: Thursday, September 24, 2009 2:39:56 AM > Subject: RE: Immune Modulators > > > I think it's a great idea, but I think it first has to be proven that > is a 'real' disease. > > 1000s are still dying from AIDS in African countries, if I'm not mistaken > ;-( > > Kristy > > From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lynn > Capone > Sent: Tuesday, September 22, 2009 6:21 AM > groups (DOT) com; office@neuroimmuned r.com > Subject: Immune Modulators > > > Dear fellow parents. > > I had an idea and wanted to check with other parents to see what they > think.. A lot of us on this group are using Imunovir because the medical > community has failed us and has not admitted/paid attention to the fact that > our kids being diagnosed with autism are not the same as cases of autism > years ago due to neuroimmune disease. We do not have the appropriate > medicine to adequately treat our children. > > I was thinking about attention was paid to those who were/are suffering from > AIDS. Over the years, although I am not an expert, it seems like great > strides have been made in the treatment of this disease and unless I am > wrong, the fatality rate is much lower than when this disease first arrived > on the scene. I know that there are probably a lot of nonprofit foundations > that over the years have raised money for research. For a lot of reasons, > money was poured into this research. With all due respect to anyone > suffering from AIDS, why can't this happen for our kids? > > My question for this group is what if we created a Neuroimmune Foundation, > nonprofit where we can get the word out and raise money for research? It may > take time to be as sucessful as other nonprofits, but is it worth trying?Can > we use similiar tactics? Does anyone know how to do this? > > I don't know anything about how to run a nonprofit or what made the AIDS > research so sucessful, but I would be open to being a part of doing what we > can so that we can raise money. > > I am not sure if this is a crazy idea, but please let me know what you > think. > > Thank-you. > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
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