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We are not doing it, but would be very interested in participating in a trial. Should I fill out the excel sheet?

Lori

Subject: [DownSyndromeInfoExchange] building a databaseTo: DownSyndromeInfoExchange Cc: "DSTNI" <dstni >Date: Wednesday, January 7, 2009, 12:35 PM

Dear All, This is very urgent. We need to get an idea how many children/adults with DS are taking some or all of the CM protocol. It will help to get funding for trials if we can get some idea of the amount of interest in this type of treatment. Stanford, Baylor and Texas Children¢s are examining the possibility of running clinical trials in the near future. This information could help them move toward trials faster. Please fill out excel sheet and send back all information will be kept private. Thanks so much, Cody

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,do we reply only if we are taking the protocol or are you interested in hearing from people who are interested in the protocol as well?RubyDear All, This is very urgent. We need to get an idea how many children/adults with DS are taking some or all of the CM protocol. It will help to get funding for trials if we can get some idea of the amount of interest in this type of treatment. Stanford, Baylor and Texas Children’s are examining the possibility of running clinical trials in the near future. This information could help them move toward trials faster. Please fill out excel sheet and send back all information will be kept private. Thanks so much, Cody <Excell spreadsheet database.xlsx>=

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Please remember to send your completed database to

privately….do not send them to the listserv or almost 500 people will

have access to your  information;-)

teresa.cody@...

Thanks;-)

KathyR

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Cody

Sent: Wednesday, January 07, 2009 1:36 PM

To: DownSyndromeInfoExchange

Cc: DSTNI

Subject: [DownSyndromeInfoExchange] building a database

Dear All,

This is very urgent. We need to

get an idea how many children/adults with DS are taking some or all of the CM

protocol. It will help to get funding for trials if we can get some idea of

the amount of interest in this type of treatment. Stanford, Baylor and Texas

Children¢s are

examining the possibility of running clinical trials in the near future. This information could

help them move toward trials faster. Please fill out excel sheet and

send back all information will be kept private.

Thanks so much,

Cody

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Is anyone else having trouble opening the file? My excel files are .xls; this one is .xlsx and I don't know what to use to open it. I am not very computer literate. :)

Thanks,Shari2009/1/7 Cody

Dear All,

This is very urgent. We need to get an idea how many children/adults with DS are taking some or all of the CM protocol. It will help to get funding for trials if we can get some idea of the amount of interest in this type of treatment. Stanford, Baylor and Texas Children's are examining the possibility of running clinical trials in the near future. This information could help them move toward trials faster. Please fill out excel sheet and send back all information will be kept private.

Thanks so much,

Cody

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There is a problem with opening this file - probably for all. I will

convey the message about the problem to someone who can help. Hang tight.

Marsha

>

> Is anyone else having trouble opening the file? My excel files are .xls;

> this one is .xlsx and I don't know what to use to open it. I am not very

> computer literate. :)

>

> Thanks,

> Shari

>

> 2009/1/7 Cody

>

> > Dear All,

> >

> >

> >

> > This is very urgent. We need to get an idea how many

children/adults with

> > DS are taking some or all of the CM protocol. It will help to get

funding

> > for trials if we can get some idea of the amount of interest in

this type of

> > treatment. Stanford, Baylor and Texas Children's are examining the

> > possibility of running clinical trials in the near future. This

information

> > could help them move toward trials faster. Please fill out excel

sheet

> > and send back all information will be kept private.

> >

> >

> >

> > Thanks so much,

> >

> >

> >

> > Cody

> >

> >

> >

>

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I got it to open with no problem.

[DownSyndromeInfoExchange] Re: building a database

There is a problem with opening this file - probably for all. I willconvey the message about the problem to someone who can help. Hang tight.Marsha>> Is anyone else having trouble opening the file? My excel files are .xls;> this one is .xlsx and I don't know what to use to open it. I am not very> computer literate. :)> > Thanks,> Shari> > 2009/1/7 Cody > > > Dear All,> >> >> >> > This is very urgent. We need to get an idea how manychildren/adults with> > DS are taking some or all of the CM protocol. It will help to getfunding> > for trials if we can get some idea of the amount of interest inthis type of> > treatment. Stanford, Baylor and Texas Children's are examining the> > possibility of running clinical trials in the near future. Thisinformation> > could help them move toward trials faster. Please fill out excelsheet> > and send back all information will be kept private.> >> >> >> > Thanks so much,> >> >> >> > Cody> >> > > >>

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It may be better for you if you use survey monkey to build your database. Either that or use Zoho Creator and post an application on your site or somewhere. This would be much better than asking everyone to pass around an xl sheet. It would provide privacy to those who are doing it and it would allow those who said they wanted to be part of the protocol later to say that they are interested.Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.comSAVE THE DATE! JULY 10-12

Cincinnati, Ohio, USABUILDING BRIDGES FOR DOWN SYNDROMERESEARCH & AWARENESS CONFERENCE

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