Re: Autism Speaks launches campaign to researc...

March 17, 2006

In a message dated 18/03/2006 10:02:28 GMT Standard Time, mark.grabiec@... writes:

This looks good doesn't it? Dame Shirley's autistic son died I think, but as an adult? I've heard her speak about fundraising.

>>>Dame Shirley has statd in the past quite catgorically and in the peice I posted hat Auism is Genetic. I'd rather see research thats actually going to help our kids NOW!

Mandi x

March 17, 2006

Yes I think her son died in his 30's.

I think it's such a great shame that so much money is going into more genetic research.

Vicky

xxxx

March 18, 2006

In a message dated 18/03/2006 12:07:16 GMT Standard Time, mark.grabiec@... writes:

What I disagree with is setting out to prove that it's solely genetic as that's a) impossible and a dead end street. Do you think that's what Dame SS thinks?

>>>Dame Shirley has been approached in person within the last 6 months about supporting biomedical research and ACTUAL treatments and refused point blank...................

But now they have been taken over by Autism Speaks who have the most money of all I think and that lot DO know about biomed, I am hoping they can steer things in a more fruitful fashion than NAAR has managed int he past.

It all looks so good on paper, I'm not holding my breath....................

Cynical Mandi in Dorset

March 18, 2006

Surely neuroscience investment is of help - and it uses words that

imply that there should be something we can do about autism. rather

than SBC let's all celebrate our aspergers syndrome and build

computers approach? She speaks quite often at fundraising seminars -

if I see her at one I'll collar her. I'm sure there's a genetic

factor in Tom's autism - even if it's the factor that makes him hang

onto toxins and excrete vitamins. What I disagree with is setting

out to prove that it's solely genetic as that's a) impossible and

a dead end street. Do you think that's what Dame SS thinks?

>

> In a message dated 18/03/2006 10:02:28 GMT Standard Time,

> mark.grabiec@... writes:

>

> This looks good doesn't it? Dame Shirley's autistic son

> died I think, but as an adult? I've heard her speak about

> fundraising.

>

> >>>Dame Shirley has statd in the past quite catgorically and in

the peice I

> posted hat Auism is Genetic. I'd rather see research thats

actually going to

> help our kids NOW!

>

> Mandi x

>

March 18, 2006

Interestingly, I looked at the Cambridge Autism Research Centre website this morning and it says they would welcome new proposals from would-be researchers particularly in the biomed field. Is this a change of heart or is it a cynical chase after funds? I hope the first.

Margaret

Re: Re: Autism Speaks launches campaign to researc...

In a message dated 18/03/2006 12:07:16 GMT Standard Time, mark.grabiec@... writes:

What I disagree with is setting out to prove that it's solely genetic as that's a) impossible and a dead end street. Do you think that's what Dame SS thinks?

>>>Dame Shirley has been approached in person within the last 6 months about supporting biomedical research and ACTUAL treatments and refused point blank...................

But now they have been taken over by Autism Speaks who have the most money of all I think and that lot DO know about biomed, I am hoping they can steer things in a more fruitful fashion than NAAR has managed int he past.

It all looks so good on paper, I'm not holding my breath....................

Cynical Mandi in Dorset__________ NOD32 1.1449 (20060317) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

March 18, 2006

Whichever it is the research happens (assuming someone comes

forward) - do we need to send this to Shattock et al or do we

think they're thinking " nah, sod it " by now. Well whatever, I'll

email him.

He's at DAN this year isn't he? I'm really tempted to go if we win

the lottery or Euro millions or my premium bonds come up (is this

what they call a broad portfolio of investments?)

>

> Interestingly, I looked at the Cambridge Autism Research Centre

website this morning and it says they would welcome new proposals

from would-be researchers particularly in the biomed field. Is this

a change of heart or is it a cynical chase after funds? I hope the

first.

> Margaret

> Re: Re: Autism Speaks

launches campaign to researc...

>

> In a message dated 18/03/2006 12:07:16 GMT Standard Time,

mark.grabiec@... writes:

> What I disagree with is setting

> out to prove that it's solely genetic as that's a) impossible

and

> a dead end street. Do you think that's what Dame SS thinks?

>

> >>>Dame Shirley has been approached in person within the last 6

months about supporting biomedical research and ACTUAL treatments

and refused point blank...................

>

> But now they have been taken over by Autism Speaks who have the

most money of all I think and that lot DO know about biomed, I am

hoping they can steer things in a more fruitful fashion than NAAR

has managed int he past.

>

> It all looks so good on paper, I'm not holding my

breath....................

>

> Cynical Mandi in Dorset

>

> DISCLAIMER

> No information contained in this post is to be construed as

medical advice. If you need medical advice, please seek it from a

suitably qualified practitioner.

>

March 18, 2006

Agree Manders - Autism Speaks is what used to be NAAR-UK. When I

spoke to their representative at the MRC/NAS conference last year they

were most definitely not interested in biomed

Anything associated with Dame Shirley has a focus on genetics - they

are searching for THE autism gene....they will be at it til kingdom

come............

It is a great shame they dont choose to focus on research that would

bear more immediate fruit as Autism Speaks is very well funded and

supported.

Zoe x

>

> In a message dated 18/03/2006 10:02:28 GMT Standard Time,

> mark.grabiec@... writes:

>

> This looks good doesn't it? Dame Shirley's autistic son

> died I think, but as an adult? I've heard her speak about

> fundraising.

>

> >>>Dame Shirley has statd in the past quite catgorically and in the

peice I

> posted hat Auism is Genetic. I'd rather see research thats actually

going to

> help our kids NOW!

>

> Mandi x

>

March 18, 2006

Jo and I spoke to her at a Manchester conference last year - she is

very opposed to tests that she percieves as 'intrusive' and would run

a mile from anything associated with taking blood from children.

She has aligned herself to the genetic treadmill and been on it a long

time.

I wrote to her last year with an impassioned plea for her to help

biomed research and received a definite no.

However, there is no harm in lots of parents writing to her with their

kids test results, and the results of treatment, and also talking to

her about these at every opportunity.

I would like to know whether, for example, she believes (as is now

widely acknowledged, even by the govt) that autism has both genetic

and environmental components. If she does believe this, why not put

some funding into researching the environmental components, as it is

this side of the research that is so woefully underfunded.

Do we have any volunteers who would be prepared to take on this line

of questioning (or any other that would further biomed objectives)?

Zoe

> >

> > In a message dated 18/03/2006 10:02:28 GMT Standard Time,

> > mark.grabiec@ writes:

> >

> > This looks good doesn't it? Dame Shirley's autistic son

> > died I think, but as an adult? I've heard her speak about

> > fundraising.

> >

> > >>>Dame Shirley has statd in the past quite catgorically and in

> the peice I

> > posted hat Auism is Genetic. I'd rather see research thats

> actually going to

> > help our kids NOW!

> >

> > Mandi x

> >

>

March 18, 2006

That's interesing Margaret. I will look at it myself

later.....although I have come across similar calls for research

proposals before that have used the word 'biomedical' to mean

something that is completely different from what we mean by it.

eg old NAAR (now Autism Speaks USA) used the term but what they meant

by it was genetics.

I will do some digging on the ARC site, and maybe e mail them with a

suggestion for research to see if it fits their definition of

biomedical. Will let you know.

Zoe

>

> Interestingly, I looked at the Cambridge Autism Research Centre

website this morning and it says they would welcome new proposals from

would-be researchers particularly in the biomed field. Is this a

change of heart or is it a cynical chase after funds? I hope the first.

> Margaret

> Re: Re: Autism Speaks launches

campaign to researc...

>

> In a message dated 18/03/2006 12:07:16 GMT Standard Time,

mark.grabiec@... writes:

> What I disagree with is setting

> out to prove that it's solely genetic as that's a) impossible

and

> a dead end street. Do you think that's what Dame SS thinks?

>

> >>>Dame Shirley has been approached in person within the last 6

months about supporting biomedical research and ACTUAL treatments and

refused point blank...................

>

> But now they have been taken over by Autism Speaks who have the

most money of all I think and that lot DO know about biomed, I am

hoping they can steer things in a more fruitful fashion than NAAR has

managed int he past.

>

> It all looks so good on paper, I'm not holding my

breath....................

>

> Cynical Mandi in Dorset

>

> DISCLAIMER

> No information contained in this post is to be construed as

medical advice. If you need medical advice, please seek it from a

suitably qualified practitioner.

>

March 18, 2006

In Norway

a research team for SIFF ( State Institute of Peoples Health)have got

approx 1,3 mill € grant from USA govenmental funding. Their belief is

that Autism have a viral cause..

Geir Flatabø

Mum231ASD@... skrev:

> In a message dated 18/03/2006 12:07:16 GMT Standard Time,

> mark.grabiec@... writes:

>

> What I disagree with is setting

> out to prove that it's solely genetic as that's a) impossible and

> a dead end street. Do you think that's what Dame SS thinks?

>

> >>>Dame Shirley has been approached in person within the last 6 months

> about supporting biomedical research and ACTUAL treatments and refused

> point blank...................

> But now they have been taken over by Autism Speaks who have the most

> money of all I think and that lot DO know about biomed, I am hoping

> they can steer things in a more fruitful fashion than NAAR has managed

> int he past.

> It all looks so good on paper, I'm not holding my

> breath....................

> Cynical Mandi in Dorset

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

> advice. If you need medical advice, please seek it from a suitably

> qualified practitioner.

>

March 18, 2006

That's very interesting, Geir.

margaret

Re: Re: Autism Speaks launches campaign

to researc...

> In Norway

> a research team for SIFF ( State Institute of Peoples Health)have got

> approx 1,3 mill € grant from USA govenmental funding. Their belief is

> that Autism have a viral cause..

>

> Geir Flatabø

>

> Mum231ASD@... skrev:

>

>> In a message dated 18/03/2006 12:07:16 GMT Standard Time,

>> mark.grabiec@... writes:

>>

>> What I disagree with is setting

>> out to prove that it's solely genetic as that's a) impossible and

>> a dead end street. Do you think that's what Dame SS thinks?

>>

>> >>>Dame Shirley has been approached in person within the last 6 months

>> about supporting biomedical research and ACTUAL treatments and refused

>> point blank...................

>> But now they have been taken over by Autism Speaks who have the most

>> money of all I think and that lot DO know about biomed, I am hoping

>> they can steer things in a more fruitful fashion than NAAR has managed

>> int he past.

>> It all looks so good on paper, I'm not holding my

>> breath....................

>> Cynical Mandi in Dorset

>>

>> DISCLAIMER

>> No information contained in this post is to be construed as medical

>> advice. If you need medical advice, please seek it from a suitably

>> qualified practitioner.

>>

March 18, 2006

I'd be happy to write. I've heard her speak about unrelated

fundraising. I'm expecting a whole bunch of test results back from

the Chicago visit and I'm pretty sure what they'll show. Steph

> > >

> > > In a message dated 18/03/2006 10:02:28 GMT Standard Time,

> > > mark.grabiec@ writes:

> > >

> > > This looks good doesn't it? Dame Shirley's autistic

son

> > > died I think, but as an adult? I've heard her speak about

> > > fundraising.

> > >

> > > >>>Dame Shirley has statd in the past quite catgorically and

in

> > the peice I

> > > posted hat Auism is Genetic. I'd rather see research thats

> > actually going to

> > > help our kids NOW!

> > >

> > > Mandi x

> > >

> >

>

March 18, 2006

From Dame Shirley's website:

"Do you have any unfulfilled ambitions?Yes, I should like to be instrumental in defeating the condition of autism through remedies aimed at prevention and cure, and to contribute more to the national debate on various social issues."

There must be some way of persuading her that biomed resaearch and treatment should be tried.

Margaret

Re: Autism Speaks launches campaign to researc...

Jo and I spoke to her at a Manchester conference last year - she isvery opposed to tests that she percieves as 'intrusive' and would runa mile from anything associated with taking blood from children.She has aligned herself to the genetic treadmill and been on it a longtime.I wrote to her last year with an impassioned plea for her to helpbiomed research and received a definite no.However, there is no harm in lots of parents writing to her with theirkids test results, and the results of treatment, and also talking toher about these at every opportunity.I would like to know whether, for example, she believes (as is nowwidely acknowledged, even by the govt) that autism has both geneticand environmental components. If she does believe this, why not putsome funding into researching the environmental components, as it isthis side of the research that is so woefully underfunded.Do we have any volunteers who would be prepared to take on this lineof questioning (or any other that would further biomed objectives)? Zoe > >> > > > In a message dated 18/03/2006 10:02:28 GMT Standard Time, > > mark.grabiec@ writes:> > > > This looks good doesn't it? Dame Shirley's autistic son > > died I think, but as an adult? I've heard her speak about > > fundraising.> > > > > > > > >>>Dame Shirley has statd in the past quite catgorically and in > the peice I > > posted hat Auism is Genetic. I'd rather see research thats > actually going to > > help our kids NOW!> > > > Mandi x> >>__________ NOD32 1.1450 (20060318) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

March 18, 2006

Do you know how far they are into their research project? and

whether they have enough volunteers?

>

> In Norway

> a research team for SIFF ( State Institute of Peoples Health)have

got

> approx 1,3 mill € grant from USA govenmental funding. Their belief

is

> that Autism have a viral cause..

>

> Geir Flatabø

>

> Mum231ASD@... skrev:

>

> > In a message dated 18/03/2006 12:07:16 GMT Standard Time,

> > mark.grabiec@... writes:

> >

> > What I disagree with is setting

> > out to prove that it's solely genetic as that's a)

impossible and

> > a dead end street. Do you think that's what Dame SS thinks?

> >

> > >>>Dame Shirley has been approached in person within the last 6

months

> > about supporting biomedical research and ACTUAL treatments and

refused

> > point blank...................

> > But now they have been taken over by Autism Speaks who have the

most

> > money of all I think and that lot DO know about biomed, I am

hoping

> > they can steer things in a more fruitful fashion than NAAR has

managed

> > int he past.

> > It all looks so good on paper, I'm not holding my

> > breath....................

> > Cynical Mandi in Dorset

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as

medical

> > advice. If you need medical advice, please seek it from a

suitably

> > qualified practitioner.

> >

March 18, 2006

They have " not started yet " , except for planning.

By volunteers you mean autistic patients,

- they know something of the numbers,

but not yet how many that fulfil criteria , and that could or would be

enrolled,

except I believe there are lots of test " taken anyway " that will be

analyzed, so it might be they will get " enough material to find something.

But the vaccinating are differing between Norway and the US, so the

resultd may not necessarily be directly useful in the US..

Geir Flatabø

Sirr skrev:

>Do you know how far they are into their research project? and

>whether they have enough volunteers?

>

>>In Norway

>>a research team for SIFF ( State Institute of Peoples Health)have

>>

>got

>

>>approx 1,3 mill € grant from USA govenmental funding. Their belief

>>

>is

>

>>that Autism have a viral cause..

>>

>>Geir Flatabø

>>

>>Mum231ASD@... skrev:

>>

>>>In a message dated 18/03/2006 12:07:16 GMT Standard Time,

>>>mark.grabiec@... writes:

>>>

>>> What I disagree with is setting

>>> out to prove that it's solely genetic as that's a)

>>>

>impossible and

>

>>> a dead end street. Do you think that's what Dame SS thinks?

>>>

>>>>>>Dame Shirley has been approached in person within the last 6

>>>>>>

>months

>

>>>about supporting biomedical research and ACTUAL treatments and

>>>

>refused

>

>>>point blank...................

>>>But now they have been taken over by Autism Speaks who have the

>>>

>most

>

>>>money of all I think and that lot DO know about biomed, I am

>>>

>hoping

>

>>>they can steer things in a more fruitful fashion than NAAR has

>>>

>managed

>

>>>int he past.

>>>It all looks so good on paper, I'm not holding my

>>>breath....................

>>>Cynical Mandi in Dorset

>>>

>>>DISCLAIMER

>>>No information contained in this post is to be construed as

>>>

>medical

>

>>>advice. If you need medical advice, please seek it from a

>>>

>suitably

>

>>>qualified practitioner.

>>>

March 18, 2006

Zoey

I would be honoured to write to this lady on behalf of Treating Autism re bio-med treatments and explain how some of our personal test results verify that bio-med works. I sure dont know everything there is to know and we havent started chelation yet but I can certainly hold my own when it comes to the Microbiology and Biochemsitry (well, bit of an exageration maybe to a non-biochemist I might sound plausible!!).

Also (not to blow my own trumpet) sadly many people like titles instead of the rantings of us mere mums!! I know our gastroenterologist always gets a little uncomfortable when I start talking about bio-flora and research studies that show this and that... Probably not sure what to respond when I remind him that 'Yes I do know that there are 2 sub-types of Clostridia, since I am a microbiologist!!' (Is there, must have forgotten that bit??)

Always knew that my rusty and dusty PhD would come in useful for something!!

As I have said about a million times in the past few weeks, I am literally about to do this Amy Yasko Full Panel and this may add more weight to the argument that the 2 things dont necessarily have to be opposites, genetics and bio-med sometimes can fit nicely together.

Let me know what you think.

Caroline

xx

March 18, 2006

HOw does it compare to the UK? Most people on this list are UK based

> >

> >>In Norway

> >>a research team for SIFF ( State Institute of Peoples Health)

have

> >>

> >got

> >

> >>approx 1,3 mill € grant from USA govenmental funding. Their

belief

> >>

> >is

> >

> >>that Autism have a viral cause..

> >>

> >>Geir Flatabø

> >>

> >>Mum231ASD@ skrev:

> >>

> >>>In a message dated 18/03/2006 12:07:16 GMT Standard Time,

> >>>mark.grabiec@ writes:

> >>>

> >>> What I disagree with is setting

> >>> out to prove that it's solely genetic as that's a)

> >>>

> >impossible and

> >

> >>> a dead end street. Do you think that's what Dame SS thinks?

> >>>

> >>>>>>Dame Shirley has been approached in person within the last 6

> >>>>>>

> >months

> >

> >>>about supporting biomedical research and ACTUAL treatments and

> >>>

> >refused

> >

> >>>point blank...................

> >>>But now they have been taken over by Autism Speaks who have the

> >>>

> >most

> >

> >>>money of all I think and that lot DO know about biomed, I am

> >>>

> >hoping

> >

> >>>they can steer things in a more fruitful fashion than NAAR has

> >>>

> >managed

> >

> >>>int he past.

> >>>It all looks so good on paper, I'm not holding my

> >>>breath....................

> >>>Cynical Mandi in Dorset

> >>>

> >>>DISCLAIMER

> >>>No information contained in this post is to be construed as

> >>>

> >medical

> >

> >>>advice. If you need medical advice, please seek it from a

> >>>

> >suitably

> >

> >>>qualified practitioner.

> >>>

March 18, 2006

I don`t know in detail,

but I believe thiomersal was taken out of vaccines earlier in Norway

(1994 ?) than in the UK.

THe extent of other vaccines I don`t know.

Geir Flatabø

Sirr skrev:

>HOw does it compare to the UK? Most people on this list are UK based

>

>>>

>>>>In Norway

>>>>a research team for SIFF ( State Institute of Peoples Health)

>>>>

>have

>

>>>>

>>>got

>>>

>>>>approx 1,3 mill € grant from USA govenmental funding. Their

>>>>

>belief

>

>>>>

>>>is

>>>

>>>>that Autism have a viral cause..

>>>>

>>>>Geir Flatabø

>>>>

>>>>Mum231ASD@ skrev:

>>>>

>>>>>In a message dated 18/03/2006 12:07:16 GMT Standard Time,

>>>>>mark.grabiec@ writes:

>>>>>

>>>>> What I disagree with is setting

>>>>> out to prove that it's solely genetic as that's a)

>>>>>

>>>impossible and

>>>

>>>>> a dead end street. Do you think that's what Dame SS thinks?

>>>>>

>>>>>>>>Dame Shirley has been approached in person within the last 6

>>>>>>>>

>>>months

>>>

>>>>>about supporting biomedical research and ACTUAL treatments and

>>>>>

>>>refused

>>>

>>>>>point blank...................

>>>>>But now they have been taken over by Autism Speaks who have the

>>>>>

>>>most

>>>

>>>>>money of all I think and that lot DO know about biomed, I am

>>>>>

>>>hoping

>>>

>>>>>they can steer things in a more fruitful fashion than NAAR has

>>>>>

>>>managed

>>>

>>>>>int he past.

>>>>>It all looks so good on paper, I'm not holding my

>>>>>breath....................

>>>>>Cynical Mandi in Dorset

>>>>>

>>>>>DISCLAIMER

>>>>>No information contained in this post is to be construed as

>>>>>

>>>medical

>>>

>>>>>advice. If you need medical advice, please seek it from a

>>>>>

>>>suitably

>>>

>>>>>qualified practitioner.

>>>>>

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