Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Ellen, I recall Ray was quite bitter about the whole NJ expierence and the lack of funding for those issues. He can articulate it better than I. I will ask him to detail what the issues were so all can see. There may be something to learn from it. Marty > > > > > > > > > > > > > > > > > > > > > > As one who was never involved in NAAR or AS, I > think > > > what > > > > she > > > > > > > said was > > > > > > > > > > > not arrogant or mean-spirited. What I took she was > > > saying > > > > is > > > > > > > there > > > > > > > > > > > hasn't been enough progress and if those who have > been > > > > using the > > > > > > > > > > > research money in a certain direction can't change > > > course, > > > > then > > > > > > > let > > > > > > > > > > > someone else. IMO, her statement wasn't toward > people, > > > it > > > > was > > > > > > > toward > > > > > > > > > > > answers. She even came back & said it wasn't her > intent. > > > > Saying > > > > > > > > > > > answers need to be found isn't to me arrogant. > > > > > > > > > > > > > > > > > > > > > > I totally understand what your saying that grant > money > > > > often has > > > > > > > > > > > stipulations attached and genetic does have a > place. > > > But, > > > > only a > > > > > > > part > > > > > > > > > > > of the place. As I've said before, no more than > 33% > > > > genetic, at > > > > > > > least > > > > > > > > > > > 33% environmental, and 33% behavioral, then > you'll have > > > a > > > > good > > > > > > > > > > > blending of how to help the kids. > > > > > > > > > > > > > > > > > > > > > > Debi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ----------------------------------------------------------\ > > > > ------ > > > > > Luggage? GPS? Comic books? > > > > > Check out fitting gifts for grads at Search. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > Luggage? GPS? Comic books? > > > Check out fitting gifts for grads at Search. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Do you Ellen or anyone else here know these people personally that we can tell them that our entire community of parents is willing to walk with them in these presentations and RFP's to AS? If they are then turned down imagine the furor we could cause stating specifically that this is a project that the " Autism Community " wants and is being turned away by the supposed " One Umbrella " organization. The more I think about it I really believe this is the only way to go to get some of these funds they are collecting in our children's names put to use we think they should be... > > > Henry, I agree with you most often but in this case > I > > don't see how this has gotten so unruly. Marty may have defended > > NAAR, we most certainly don't have to agree with that stance, but I > > didn't really see an AS butt kissing going on in his posts. I > thought > > I put out a good question/suggestion earlier and was waiting for a > > response, instead more posturing. I like both of you from what > > responses and queries I've seen, and am not defending anything so > > please don't bring down the gauntlet on me for saying this > but, " PLAY > > NICE! Remember I've been watching Toy Story all day. - > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Ray and I have had numerous conversations about this. After sitting on the council for a year and being frustrated, plus a difficlt pregancy last year, I had to walk away. Ellen > > > > > > > > > > > > > > > > > > > > > > > > As one who was never involved in NAAR or AS, I > > think > > > > what > > > > > she > > > > > > > > said was > > > > > > > > > > > > not arrogant or mean-spirited. What I took she was > > > > saying > > > > > is > > > > > > > > there > > > > > > > > > > > > hasn't been enough progress and if those who have > > been > > > > > using the > > > > > > > > > > > > research money in a certain direction can't change > > > > course, > > > > > then > > > > > > > > let > > > > > > > > > > > > someone else. IMO, her statement wasn't toward > > people, > > > > it > > > > > was > > > > > > > > toward > > > > > > > > > > > > answers. She even came back & said it wasn't her > > intent. > > > > > Saying > > > > > > > > > > > > answers need to be found isn't to me arrogant. > > > > > > > > > > > > > > > > > > > > > > > > I totally understand what your saying that grant > > money > > > > > often has > > > > > > > > > > > > stipulations attached and genetic does have a > > place. > > > > But, > > > > > only a > > > > > > > > part > > > > > > > > > > > > of the place. As I've said before, no more than > > 33% > > > > > genetic, at > > > > > > > > least > > > > > > > > > > > > 33% environmental, and 33% behavioral, then > > you'll have > > > > a > > > > > good > > > > > > > > > > > > blending of how to help the kids. > > > > > > > > > > > > > > > > > > > > > > > > Debi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ----------------------------------------------------------\ > > > > > ------ > > > > > > Luggage? GPS? Comic books? > > > > > > Check out fitting gifts for grads at Search. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > > Luggage? GPS? Comic books? > > > > Check out fitting gifts for grads at Search. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 This is actually a good idea. Jim Oleske has been unable to get funding for reseach into auotimmune issues and autism but I think he has been successful in other realms. Vijendra Singh, another researcher into autoimmune, MMR, and autism issues has been unable to gain any funding because of the past controversial research that he has done. I have both of their contact information I think. I or Ray will reach out to them and see if this is an avenue that they might want to pursue. Ellen > > > > Henry, I agree with you most often but in this > case > > I > > > don't see how this has gotten so unruly. Marty may have defended > > > NAAR, we most certainly don't have to agree with that stance, but > I > > > didn't really see an AS butt kissing going on in his posts. I > > thought > > > I put out a good question/suggestion earlier and was waiting for a > > > response, instead more posturing. I like both of you from what > > > responses and queries I've seen, and am not defending anything so > > > please don't bring down the gauntlet on me for saying this > > but, " PLAY > > > NICE! Remember I've been watching Toy Story all day. - > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 PLEASE don't have Ray go thru his boat load of lies and re-writing of History about the Gov Council. Ellen, the point that you sat on the council yourself is a very good one. You were welcome to try to change the structure or speak up about your grievances when you were in the meetings. And why did TAAP not provide another representative when you were on Med LOA? It is so easy for people to complain and blame and not take responsibility for something they were just as responsible for as the current members of the council. The Gov council is open to public and meetings are posted on the website. Heidi From: "martinx2us" <martyx2@...>Reply-EOHarm To: EOHarm Subject: Re: Wagers for AS shuting down??Date: Thu, 05 Jul 2007 18:14:21 -0000 Ellen, I recall Ray was quite bitter about the whole NJ expierence andthe lack of funding for those issues. He can articulate it better thanI. I will ask him to detail what the issues were so all can see. Theremay be something to learn from it.Marty>> ,> Youre exactly right....I know for a fact that there is a certain> NJ State funded council, The Governors Council on Autism, that says> they never get any "good proposals" in regards to environmental> research....and this isnt just for research into vaccines......but> they have and they still dont fund it. I sat on the council for TAAP> one year and Ray Gallup had in the past for a few years, and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Heidi, I dont know if you recall, but right after that RFP was when I went out on medical LOA......I cant explain why April who was in charge of TAAP at the time didnt appoint a replacement as I was on a medical LOA and I wasnt involved in anything inregrds to this .....also this is the time I also resigned from my role as the president of the NJ chapter of TAAP......BUT I can tell you I did see firsthand a worthwhile proposal submitted by Jim Oleske go unfunded because the SAB who was handpicked that year by Emmanuel Diccio-Bloom (who now sits on the Scientific Advisory committee for AS and sat on the SAC for NAAR prior to that) and Bob Trelstadt turn it down..2 doctors/researchers who see no need to do this type of research because they dont believe there is a connection ..I didnt hear this second hand from Ray..... I have gotten tons of correspondence from both Oleske and Singh who dont do this type of research anymore because they cant get funded for it. They feel like theyre wasting their time. I dont know about subsequent years but the fact that it happened once means it happened one too many times. (something else I havent heard from just Ray) I know youve sat on the council a long time and I respect everything the council members have done and tried to do in good intentions but the council members were not involved the year I sat on the council in picking the SAB, well not all of them, Diccio-Bloom was allowed to eventhough he served as a representative for NAAR and ended up benfiting from the RFP that year with research money. Also, he has a seat despite the organiztion no longer existing. I am in no way criticizing you as a person but the whole RFP process at the council. The Governors Council uses the same type of procedure in picking reseach proposals as AS...they only release info on the proposals they fund, not the ones they turned down. I dont plan on having a personal pissing contest with you or anyone about this. I know what I saw and it was less than desirable. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 why do you think it was Manny who chose the SAB? It was always Trelstad in charge. You think he partnered with Manny that time? From: "Ellen Sweeney" <support4autism@...>Reply-EOHarm To: EOHarm Subject: Re: Wagers for AS shuting down??Date: Thu, 05 Jul 2007 20:26:32 -0000 Heidi,I dont know if you recall, but right after that RFP was when I went out on medical LOA......I cant explain why April who was in charge of TAAP at the time didnt appoint a replacement as I was on a medical LOA and I wasnt involved in anything inregrds to this .....also this is the time I also resigned Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 My intention was not to rip on Marty. Just trying to say that when you've worked for and believed in an organization for awhile, it's hard to realize that they're falling from grace. (I'm trying to express what I mean here appropriately.....) For a few years, I kept supporting them, but my eyebrows would raise at some of the things they were doing and how they were treating people. Eventually I realized what they were all about. I would venture to guess that Marty, having put a lot of work into NAAR, is having a hard time believing what's become of the organization he used to support. (Tell me if I'm misrepresenting you here, Marty.) I think he's still trying to see some of the good. Honestly, they've been doing some good here in PA as far as lobbying for our insurance bill. But overall, I still think they're dangerous, I don't like the messages they send, I think they should be funding more biomedical research....... yadda yadda. All the stuff you guys think. All I was saying to Marty was -- you'll soon realize that you wasted some time helping them. It's a tough pill to swallow. > > > > > > > > > > > > > > > > > > > > > > > > As one who was never involved in NAAR or AS, I > think > > > > what > > > > > she > > > > > > > > said was > > > > > > > > > > > > not arrogant or mean-spirited. What I took she was > > > > saying > > > > > is > > > > > > > > there > > > > > > > > > > > > hasn't been enough progress and if those who have > been > > > > > using the > > > > > > > > > > > > research money in a certain direction can't change > > > > course, > > > > > then > > > > > > > > let > > > > > > > > > > > > someone else. IMO, her statement wasn't toward > people, > > > > it > > > > > was > > > > > > > > toward > > > > > > > > > > > > answers. She even came back & said it wasn't her > > > intent. > > > > > Saying > > > > > > > > > > > > answers need to be found isn't to me arrogant. > > > > > > > > > > > > > > > > > > > > > > > > I totally understand what your saying that grant > money > > > > > often has > > > > > > > > > > > > stipulations attached and genetic does have a > place. > > > > But, > > > > > only a > > > > > > > > part > > > > > > > > > > > > of the place. As I've said before, no more than > 33% > > > > > genetic, at > > > > > > > > least > > > > > > > > > > > > 33% environmental, and 33% behavioral, then you'll > > > have > > > > a > > > > > good > > > > > > > > > > > > blending of how to help the kids. > > > > > > > > > > > > > > > > > > > > > > > > Debi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ----------------------------------------------------------\ > > > > > ------ > > > > > > Luggage? GPS? Comic books? > > > > > > Check out fitting gifts for grads at Search. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > Building a website is a piece of cake. > > Small Business gives you all the tools to get online. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Oh thank god someone can write today. This expresses exactly what I was trying to say. I'm a bit disfluent today! > > > > > > > > > > > > > > > > > > > > > > As one who was never involved in NAAR or AS, I think > > > what > > > > she > > > > > > > said was > > > > > > > > > > > not arrogant or mean-spirited. What I took she was > > > saying > > > > is > > > > > > > there > > > > > > > > > > > hasn't been enough progress and if those who have been > > > > using the > > > > > > > > > > > research money in a certain direction can't change > > > course, > > > > then > > > > > > > let > > > > > > > > > > > someone else. IMO, her statement wasn't toward people, > > > it > > > > was > > > > > > > toward > > > > > > > > > > > answers. She even came back & said it wasn't her > > intent. > > > > Saying > > > > > > > > > > > answers need to be found isn't to me arrogant. > > > > > > > > > > > > > > > > > > > > > > I totally understand what your saying that grant money > > > > often has > > > > > > > > > > > stipulations attached and genetic does have a place. > > > But, > > > > only a > > > > > > > part > > > > > > > > > > > of the place. As I've said before, no more than 33% > > > > genetic, at > > > > > > > least > > > > > > > > > > > 33% environmental, and 33% behavioral, then you'll > > have > > > a > > > > good > > > > > > > > > > > blending of how to help the kids. > > > > > > > > > > > > > > > > > > > > > > Debi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ----------------------------------------------------------\ > > > > ------ > > > > > Luggage? GPS? Comic books? > > > > > Check out fitting gifts for grads at Search. > > > > > > > > > > > > > > > > > > > > > --------------------------------- > Be a better Heartthrob. Get better relationship answers from someone who knows. > Answers - Check it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 > > > > > > > > > > > > If Bob and Suzanne had any integrity they would walk > > > away from > > > > > > AS and expose the group for what it really is. Oh, but the > > > $$$$$$$$ > > > > > > seems to get in the way. Maybe they are taking their > chances > > > with the > > > > > > bouncer at the Pearly Gates. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Andy, Do you have any feel for about what percentage are getting good results? I kept records of every dose of chelating drugs I used. I wonder if many others did the same. > > > > > > > > > > > > > > If Bob and Suzanne had any integrity they would walk > > > > away from > > > > > > > AS and expose the group for what it really is. Oh, but the > > > > $$$$$$$$ > > > > > > > seems to get in the way. Maybe they are taking their > > chances > > > > with the > > > > > > > bouncer at the Pearly Gates. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Heidi, I sat at the table along with you and all the others when Trelstadt and Manny DiCiccio-Bloom pulled out printouts of backgrounds of researchers for us to look at. They both said these were the guys/gals that were chairing the SAB and they consulted one another about them away from the council. Manny was as much in charge of chairing the SAB as Trelstadt the year that I sat on the council. Personally in hindsight I dont find any of this surprising considering the level of corruption that has come out of UMDNJ in the recent past. (Its all been in the NJ papers in the last year or two.) Again, this isnt a reflection on you or the COSAC rep, its a reflection on the NAAR rep (who not surprisingly sits on the SAC of AS), the SAB, and the inadequacies and shortcomings of that aspect of the council. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I will have to ask the COSAC rep if he remembers this as I don't. the corruption at UMDNJ has nothing to do with the Gov Council, it is all about overbilling insurance companies, etc. The new legislation will take the council out of UMDNJ and will not allow members of the council to apply for grant money. From: "Ellen Sweeney" <support4autism@...>Reply-EOHarm To: EOHarm Subject: Re: Wagers for AS shuting down??Date: Fri, 06 Jul 2007 00:09:52 -0000 Heidi,I sat at the table along with you and all the others when Trelstadt and Manny DiCiccio-Bloom pulled out printouts of backgrounds of researchers for us to look at. They both said these were the guys/gals that were chairing the SAB and they consulted one another about them away from the council. Manny was as much in charge of chairing the SAB as Trelstadt the year that I sat on the council. Personally in hindsight I dont find any of this surprising considering the level of corruption that has come out of UMDNJ in the recent past. (Its all been in the NJ papers in the last year or two.)Again, this isnt a reflection on you or the COSAC rep, its a reflection on the NAAR rep (who not surprisingly sits on the SAC of AS), the SAB, and the inadequacies and shortcomings of that aspect of the council.Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I can say for certain I saw improvements in Allie when we did Andy's protocol with ALA/every 3-4hrs. Our problem got to be after about 10 rounds she refused all liquids except water, wouldn't at that time swallow pills, and we couldn't afford for her to stop drinking water, so we stopped. Now we are doing IV chelation (Bradstreet protocol), which is helping her tremendously and she asks for it, so I wanna stick with what's working, though I wouldn't hesitate for a sec to go back to Andy's if need-be. Debi > > > > I'd love to see a research project on the Autism Mercury group to see > > how many people have tried Andy Cutler's protocol, how many rounds of > > chelation they did, what drugs they used and what symptoms improved > > or not. You wouldn't need to be a scientist, just a good record > > keeper/statistician. > > And a pretty good detective, and thorough background checker. > > A lot of people bounce on and off, you'd have to find them to get a good sample. > > Many people do not have great memories, you'd hvae to find their old posts on the web > and compare them with the current story to select the subset of people where their > reporting is constant so that you can believe you have accurate information. > > Then you'd have to work with them to get the information you need, instead of what they > thought to keep track of. > > Andy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 That seems like a particularly fair analysis from . Re: Wagers for AS shuting down?? My intention was not to rip on Marty. Just trying to say that whenyou've worked for and believed in an organization for awhile, it'shard to realize that they're falling from grace. (I'm trying toexpress what I mean here appropriately.....)For a few years, I kept supporting them, but my eyebrows would raiseat some of the things they were doing and how they were treatingpeople. Eventually I realized what they were all about.I would venture to guess that Marty, having put a lot of work intoNAAR, is having a hard time believing what's become of theorganization he used to support. (Tell me if I'm misrepresenting youhere, Marty.)I think he's still trying to see some of the good. Honestly, they've been doing some good here in PA as far as lobbyingfor our insurance bill. But overall, I still think they're dangerous,I don't like the messages they send, I think they should be fundingmore biomedical research....... yadda yadda. All the stuff you guysthink.All I was saying to Marty was -- you'll soon realize that you wastedsome time helping them. It's a tough pill to swallow.> > > > > > > > > > > >> > > > > > > > > > > > As one who was never involved in NAAR or AS, I> think> > > > what> > > > > she> > > > > > > > said was> > > > > > > > > > > > not arrogant or mean-spirited. What I took she was> > > > saying> > > > > is> > > > > > > > there> > > > > > > > > > > > hasn't been enough progress and if those who have> been> > > > > using the> > > > > > > > > > > > research money in a certain direction can't change> > > > course,> > > > > then> > > > > > > > let> > > > > > > > > > > > someone else. IMO, her statement wasn't toward> people,> > > > it> > > > > was> > > > > > > > toward> > > > > > > > > > > > answers. She even came back & said it wasn't her> > > intent.> > > > > Saying> > > > > > > > > > > > answers need to be found isn't to me arrogant.> > > > > > > > > > > >> > > > > > > > > > > > I totally understand what your saying that grant> money> > > > > often has> > > > > > > > > > > > stipulations attached and genetic does have a> place.> > > > But,> > > > > only a> > > > > > > > part> > > > > > > > > > > > of the place. As I've said before, no more than> 33%> > > > > genetic, at> > > > > > > > least> > > > > > > > > > > > 33% environmental, and 33% behavioral, then you'll> > > have> > > > a> > > > > good> > > > > > > > > > > > blending of how to help the kids.> > > > > > > > > > > >> > > > > > > > > > > > Debi> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > ----------------------------------------------------------\> > > > > ------> > > > > > Luggage? GPS? Comic books?> > > > > > Check out fitting gifts for grads at Search.> > > > > >> > > > >> > > >> > >> >> >> >> >> >> >> > ---------------------------------> > Building a website is a piece of cake.> > Small Business gives you all the tools to get online.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Regardless of what the COSAC rep tells you, it did happen. I have a pretty good memory and this was one of the main reasons despite being told by my ob/gyn to do otherwise I was considering still coming to council meetings. (this would have been a major stressor!) The scandal at UMDNJ goes beyond billing. It goes along with members of the staff giving people no show jobs in return for favors and referrals to UMDNJ. One may also assume that there could have been favoritism in selecting who gets what research money from the council and Trelstadt's role as heading the SAB. Im not saying its a definite occurrence but a possibility. The fact that Diccio-Bloom was even allowed a say in who was part of the SAB that was considering his application for grant money which he ultimately received is a conflict. I am glad to hear the new legislation will take care of this. I hope that once that is taken care of maybe you and the other impartial council members will consider tackling the issue of a more impartial SAB. Maybe by allowing the council representatves for each group represented being allowed to make suggestions on who to ask to staff the SAB. Also Id address the fact since NAAR no longer exists and is now part of a NY-based autism agency, Autism Speaks, they should no longer have a representative on the NJ Governors Council on Autism. But I understand how you might be reluctant with you being the representative for CAN which is now also a part of AS. all the best, Ellen Quote Link to comment Share on other sites More sharing options...
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