Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 My understanding if memory serves correctly - the MIND institute received funding from the state of California ($20 million+?) to perform a large scale study searching for the cause of autims using blood samples from newborns. The study replicates the small-scale study conducted last year in which the blood samples of children who were later found to have autism, mental retardation or cerebral palsy were evaluated, looking for any commonalities. There were no commonalities among the samples from children with MR or CP, but a common blood protein was found in the samples from children with autism. So, something was present in these kids at birth. Since all newborns in CA have a blood sample taken for PKU testing, the samples of kids who have since been diagnosed with autism are on file in Sacramento and are being used in testing. I assume that's what is meant by controlled - blood samples from birth, before vaccines, etc. I'm sure they do other studies as well. Their website says they have a clinic; it appears they mostly to assessments and diagnosing. > Today I received a very slick and expensive annual report from the MIND > Institute at UC <http://mindinstitute.ucdmc.ucdavis.edu/>. They're > building a $48 million clinic to study and treat children with > neurodevelopmental disorders. I read the web site and the report, but I'm > still not clear on how they treat autism. > > However the report says that they will conduct the first-ever controlled > epidemiological study of environmental factors in the etiology of autism. > > Does anyone know about the institute or have personal experience with them? > > TIA, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 I lived in Sacramento when they first started and filled out the " application " to get involved. Apparently I didn't have the $ or connections or degrees they desired since I never heard from them. I stressed my belief in the mercury-autism connection and figured that perhaps that ruled me out. S From: mm_mommy [mailto: vberrey@...]To: @...: Fri, 06 Sep 2002 23:28:16 -0000Subject: [ ] Re: MIND InstituteMy understanding if memory serves correctly - the MIND institute received funding from the state of California ($20 million+?) to perform a large scale study searching for the cause of autims using blood samples from newborns. The study replicates the small-scale study conducted last year in which the blood samples of children who were later found to have autism, mental retardation or cerebral palsy were evaluated, looking for any commonalities. There were no commonalities among the samples from children with MR or CP, but a common blood protein was found in the samples from children with autism. So, something was present in these kids at birth. Since all newborns in CA have a blood sample taken for PKU testing, the samples of kids who have since been diagnosed with autism are on file in Sacramento and are being used in testing. I assume that's what is meant by controlled - blood samples from birth, before vaccines, etc.I'm sure they do other studies as well. Their website says they have a clinic; it appears they mostly to assessments and diagnosing. & gt; Today I received a very slick and expensive annual report from the MIND & gt; Institute at UC & lt;http://mindinstitute.ucdmc.ucdavis.edu/ & gt;. They're & gt; building a $48 million clinic to study and treat children with & gt; neurodevelopmental disorders. I read the web site and the report, but I'm & gt; still not clear on how they treat autism. & gt; & gt; However the report says that they will conduct the first-ever controlled & gt; epidemiological study of environmental factors in the etiology of autism. & gt; & gt; Does anyone know about the institute or have personal experience with them? & gt; & gt; TIA, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 From what I've been following, this is Rick Rollin's project. (I have been assuming, anyway, since he founded MIND) Rick Rollins is high profile in the autism community. He has a son with autism. I believe he was involved in the ASA. (like a board member, but I can't be sure) He has an impressive jacket in the autism organizations. I used to read about him in FEAT a long time ago. (now Schaefer List) About a year ago, I read that what MIND was going to try to do was create a one-stop shop hospital for autism. (my dream...you check in and they take care of physical problems on your child, then you check out...like with other " sick " children) It is supposed to be designed to be more " home-like " and less intimidating for children on the spectrum. They are supposed to be able to service 1000 children a month. I think that they are doing it smart. They are doing thing in a medically, governmentally (my new words) fashion to keep things on the scientific up and up. Then they will qualify for all those big $ grants that the CDC and NIH are being forced to give out for autism. Then also, there findings will have to be " accepted " , rather than rejected, as they like to do to Dr. Wakefield, Singh, etc. Regarding the mercury-autism connection....I doubt that they ruled it out of " investigating further " . They probably are going to do as many studies as they can get funding for. (to pull all this research together) But, I know that Rick Rollins was advocating the vaccine/autism connection about four years ago. I can't imagine that he changed his mind. I have been anxious for it to go up to hear more about it. We live in Illinois, but I would go anywhere to help my child. Is it still set to open this spring? Shirley > Today I received a very slick and expensive annual report from the MIND > Institute at UC <http://mindinstitute.ucdmc.ucdavis.edu/>. They're > building a $48 million clinic to study and treat children with > neurodevelopmental disorders. I read the web site and the report, but I'm > still not clear on how they treat autism. > > However the report says that they will conduct the first-ever controlled > epidemiological study of environmental factors in the etiology of autism. > > Does anyone know about the institute or have personal experience with them? > > TIA, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 I think Rick Rollens is involved but someone with a long Greek last name beginning w/ T (sorry I don't remember it) put up a big chunk of the $ to get it started and quite a few UC folks play a role from what I understand. S From: ericshirl [mailto: ericshirl@...]To: @...: Sat, 07 Sep 2002 13:15:26 -0000Subject: [ ] Re: MIND InstituteFrom what I've been following, this is Rick Rollin's project. (I have been assuming, anyway, since he founded MIND) Rick Rollins is high profile in the autism community. He has a son with autism. I believe he was involved in the ASA. (like a board member, but I can't be sure) He has an impressive jacket in the autism organizations. I used to read about him in FEAT a long time ago. (now Schaefer List) About a year ago, I read that what MIND was going to try to do was create a one-stop shop hospital for autism. (my dream...you check in and they take care of physical problems on your child, then you check out...like with other " sick " children) It is supposed to be designed to be more " home-like " and less intimidating for children on the spectrum. They are supposed to be able to service 1000 children a month. I think that they are doing it smart. They are doing thing in a medically, governmentally (my new words) fashion to keep things on the scientific up and up. Then they will qualify for all those big $ grants that the CDC and NIH are being forced to give out for autism. Then also, there findings will have to be " accepted " , rather than rejected, as they like to do to Dr. Wakefield, Singh, etc. Regarding the mercury-autism connection....I doubt that they ruled it out of " investigating further " . They probably are going to do as many studies as they can get funding for. (to pull all this research together) But, I know that Rick Rollins was advocating the vaccine/autism connection about four years ago. I can't imagine that he changed his mind.I have been anxious for it to go up to hear more about it. We live in Illinois, but I would go anywhere to help my child. Is it still set to open this spring?Shirley & gt; Today I received a very slick and expensive annual report from the MIND & gt; Institute at UC & lt;http://mindinstitute.ucdmc.ucdavis.edu/ & gt;. They're & gt; building a $48 million clinic to study and treat children with & gt; neurodevelopmental disorders. I read the web site and the report, but I'm & gt; still not clear on how they treat autism. & gt; & gt; However the report says that they will conduct the first-ever controlled & gt; epidemiological study of environmental factors in the etiology of autism. & gt; & gt; Does anyone know about the institute or have personal experience with them? & gt; & gt; TIA, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Here is the link to the MIND Institute http://mindinstitute.ucdmc.ucdavis.edu/index.htm If you look under pharmacology they disucuss antibiotics and antiviroals. This shows that they are up to date on the viral connection. (like measles) Then under research, you can find that they are studying the Measle connection. The site discusses using new technology, neuroimaging, melatonin and sleep patterns, immunology, environmental factors, and genes. It sounds promising to me. Shirley > From: ericshirl [mailto: ericshirl@h...] @y...: Sat, 07 Sep 2002 13:15:26 -0000Subject: [ ] Re: MIND InstituteFrom what I've been following, this is Rick Rollin's project. (I have been assuming, anyway, since he founded MIND) Rick Rollins is high profile in the autism community. He has a son with autism. I believe he was involved in the ASA. (like a board member, but I can't be sure) He has an impressive jacket in the autism organizations. I used to read about him in FEAT a long time ago. (now Schaefer List) About a year ago, I read that what MIND was going to try to do was create a one-stop shop hospital for autism. (my dream...you check in and they take care of physical problems on your child, then you check out...like with other " sick " children) It is supposed to be designed to be more " home-like " and less intimidating for children on the spectrum. They are supposed to be able to service 1000 children a month. I think that they are doing it smart. They are doing thing in a medically, governmentally (my new words) fashion to keep things on the scientific up and up. Then they will qualify for all those big $ grants that the CDC and NIH are being forced to give out for autism. Then also, there findings will have to be " accepted " , rather than rejected, as they like to do to Dr. Wakefield, Singh, etc. Regarding the mercury-autism connection....I doubt that they ruled it out of " investigating further " . They probably are going to do as many studies as they can get funding for. (to pull all this research together) But, I know that Rick Rollins was advocating the vaccine/autism connection about four years ago. I can't imagine that he changed his mind.I have been anxious for it to go up to hear more about it. We live in Illinois, but I would go anywhere to help my child. Is it still set to open this spring?Shirley --- In @y..., Lynne Arnold wrote: & gt; Today I received a very slick and expensive annual report from the MIND & gt; Institute at UC & lt;http://mindinstitute.ucdmc.ucdavis.edu/ & gt;. They're & gt; building a $48 million clinic to study and treat children with & gt; neurodevelopmental disorders. I read the web site and the report, but I'm & gt; still not clear on how they treat autism. & gt; & gt; However the report says that they will conduct the first-ever controlled & gt; epidemiological study of environmental factors in the etiology of autism. & gt; & gt; Does anyone know about the institute or have personal experience with them? & gt; & gt; TIA, Lynne > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 The annual report says the new building is set to open Spring 2003. But the clinic has been operating for two years and saw nearly 2,400 kids in 2001. Lynne > From: " ericshirl " <ericshirl@...> > Reply- > Date: Sat, 07 Sep 2002 13:15:26 -0000 > > Subject: [ ] Re: MIND Institute > > > From what I've been following, this is Rick Rollin's project. (I > have been assuming, anyway, since he founded MIND) Rick Rollins is > high profile in the autism community. He has a son with autism. I > believe he was involved in the ASA. (like a board member, but I can't > be sure) He has an impressive jacket in the autism organizations. I > used to read about him in FEAT a long time ago. (now Schaefer List) > > About a year ago, I read that what MIND was going to try to do was > create a one-stop shop hospital for autism. (my dream...you check in > and they take care of physical problems on your child, then you check > out...like with other " sick " children) It is supposed to be designed > to be more " home-like " and less intimidating for children on the > spectrum. They are supposed to be able to service 1000 children a > month. > > I think that they are doing it smart. They are doing thing in a > medically, governmentally (my new words) fashion to keep things on > the scientific up and up. Then they will qualify for all those big $ > grants that the CDC and NIH are being forced to give out for autism. > Then also, there findings will have to be " accepted " , rather than > rejected, as they like to do to Dr. Wakefield, Singh, etc. > > Regarding the mercury-autism connection....I doubt that they ruled it > out of " investigating further " . They probably are going to do as > many studies as they can get funding for. (to pull all this research > together) But, I know that Rick Rollins was advocating the > vaccine/autism connection about four years ago. I can't imagine that > he changed his mind. > > I have been anxious for it to go up to hear more about it. We live > in Illinois, but I would go anywhere to help my child. Is it still > set to open this spring? > > Shirley > > > >> Today I received a very slick and expensive annual report from the > MIND >> Institute at UC <http://mindinstitute.ucdmc.ucdavis.edu/>. > They're >> building a $48 million clinic to study and treat children with >> neurodevelopmental disorders. I read the web site and the report, > but I'm >> still not clear on how they treat autism. >> >> However the report says that they will conduct the first-ever > controlled >> epidemiological study of environmental factors in the etiology of > autism. >> >> Does anyone know about the institute or have personal experience > with them? >> >> TIA, Lynne > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 The MIND institute does not treat children - they conduct research studies. I've vented on this before. They have millions of dolars that they pay to whoever can put together the most convincing proposals, then the money goes to " studies " that will end up on a shelf at some university five years from now. I've actually spoken to people who work there and they admit that their purpose is not to find a cure, per se, but to conduct research. Not that I think all research is useless, but our kids are on a VERY short timeline and my personal feeling is that this huge amount of funding could be much better spent in the hands on doctors such as Homes and even Aguilar, who actually doing real-time treatment. I live less than an hour from the MIND institute and I've contacted them several times asking about having my daughter seen for treatment or even diagnosis. I was told they don't really " do that kind of thing " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 The MIND Institute has been open for several years. Their " Clinic " is very small (one doctor, one nurse, a couple of support staff) and they don't have anything like the one-stop shop you desribed, which sounds wonderful. As far as I'm concerned, they're a big, academic, money-hole. I wonder if Rick Rollins, who is a parent-founder, really feels that this turned out the way he envisioned. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hi, I'm not sure where you are calling, but I would pursue this if you are that close. This link to the MIND institute says that there is a clinic that does provide treatment. http://mindinstitute.ucdmc.ucdavis.edu/clinic/index.htm Then if you go to home from this link, you can find out about the new treatment center that is due to open up this spring. When I was following the IOM committee meetings, one of their recommendations was to establish a 3 to 5 centers for autism that were supposed to be " Centers for Excellence " . Shortly after, I read that the MIND institute was going to build one of these. Snce then I check their site periodically to see if/when it is to be done. But I think you should go to the site and find contact informaiton there. Let us know if you don't find anything, but it does say that the clinic provides treatment. Best of luck! Shirley > The MIND institute does not treat children - they conduct research studies. > I've vented on this before. They have millions of dolars that they pay to > whoever can put together the most convincing proposals, then the money goes > to " studies " that will end up on a shelf at some university five years from > now. I've actually spoken to people who work there and they admit that their > purpose is not to find a cure, per se, but to conduct research. Not that I > think all research is useless, but our kids are on a VERY short timeline and > my personal feeling is that this huge amount of funding could be much better > spent in the hands on doctors such as Homes and even Aguilar, who actually > doing real-time treatment. I live less than an hour from the MIND institute > and I've contacted them several times asking about having my daughter seen > for treatment or even diagnosis. I was told they don't really " do that kind > of thing " . > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I have called the MIND Institute, at the advice of my pediatrician who wanted a specialist for my daughter's autism. I was told that the clinic at MIND was very small, and they saw only a few children, mostly under three for diagnosis, since they only had a tiny office and only one doctor. They told me their primary purpose is research. I think it's very sad, living this close to a center devoted to autism and only being able to get on a list for relatively long-term research studies, the results of which will never help my daughter in her lifetime. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Check out Pfeiffer Treatment Centre website. They are outside Chicago. Tremendous hope for you there. >From: nelsoneyes@... >Reply- > >Subject: Re: [ ] Re: MIND Institute >Date: Sun, 8 Sep 2002 22:27:47 EDT > >I have called the MIND Institute, at the advice of my pediatrician who >wanted >a specialist for my daughter's autism. I was told that the clinic at MIND >was >very small, and they saw only a few children, mostly under three for >diagnosis, since they only had a tiny office and only one doctor. They told >me their primary purpose is research. I think it's very sad, living this >close to a center devoted to autism and only being able to get on a list >for >relatively long-term research studies, the results of which will never help >my daughter in her lifetime. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2010 Report Share Posted September 18, 2010 What is your experience working with the MIND institute in UC , for those who have either participated or enrolled in their research. I am curious if anyone has insight into who sets their agenda on what gets researched etc. Thanks, Quote Link to comment Share on other sites More sharing options...
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