Re: research

[Guest guest]



I sent him an email and it bounced back...can you check the correct email address?

Thank you,

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

[DownSyndromeInfoExchange] research

Thought this was interesting. Sally Mother to DS 13Parents, Here is an opportunity to impactcutting edge research!IntroMy name is Edie , and I am conducting a survey for Dr. Mobley,Founder and Director of The Center for Research and Treatment of DownSyndrome at Stanford University, to learn what therapies and supplementsare working to overcome the challenges presented by Down syndrome. Thequestion is simple - "What is working?" We will be looking for clustersof similar initiatives resulting in similar outcomes. If those clustersdo form, then further analysis will be done. If we see trends whichcould be helpful, we will also make a report available to parents.RequestWe need your HELP please. We need to compile a list of every singletherapy and supplement parents have used. Please email me what you havedone or are doing with your child in terms of therapies, treatments,supplements, you name it - we want to know about it. I owe Dr. Mobleythis information by April 14th, so I would appreciate your input byApril 9th. Even if you cannot remember everything, that is OK - pleasejust email me that which you do remember.Next StepsThe next steps will be as follows: 1) Design initial survey instrument,2) Test the survey via phone interviews on 5 individuals then 10 then50, 3) After 50 surveys are completed the final survey instrument willbe written, 4) Conduct 2,000+ surveys. The final survey may or may notbe phone based. We will also explore an Internet based informationgathering system as well. If you would be willing to be a guinea pigfor a phone survey, please indicate so in your email and provide me yourphone number. Your input and time would be very helpful andappreciated!Background - FYII proposed to Dr. Mobley in August at the NDSC convention acomplementary therapy research project. The research I proposed was toobroad. He, instead, came up with the idea to simply survey parents tolearn what is working. Pharmaceutical companies go through a similarprocess when researching chemical compounds to find breakthroughproducts. Surveying patient groups, however, breaks new ground in theresearch world. Usually scientists do not communicate with the"end-user". (Isn't that amazing? I did not realize this until visitingwith him. From my non-researcher's perspective, it appears thescientists have made a tremendous error in oversight to ignore such arich source of leads.)I sure hope you will take a few minutes to email me your input. I cannot compile this list without the help of hundreds of trailblazingparents. Let's be heard!!Thanks,Edie edie.howardcomcast (DOT) netPlease feel free to call if you have any questions.P/F: >

[Guest guest]

This sounds very interesting! Where did you hear this from? And who is this person? Is there any way to verify the validity of this and why isn't it coming from DSTRF or Mobley himself?I have an e-mail into DSRTF asking what they know about this and will pass on any information I receive regarding this. Carol in IL AIM doihavtasay1 GigaTribe

doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----To: DownSyndromeInfoExchange Sent: Saturday, April 5, 2008 2:44:34 PMSubject: [DownSyndromeInfoExchange] research

Thought this was interesting.

Sally

Mother to DS 13

Parents,

Here is an opportunity to impactcutting edge research!IntroMy name is Edie , and I am conducting a survey for Dr. Mobley,Founder and Director of The Center for Research and Treatment of DownSyndrome at Stanford University, to learn what therapies and supplementsare working to overcome the challenges presented by Down syndrome. Thequestion is simple - "What is working?" We will be looking for clustersof similar initiatives resulting in similar outcomes. If those clustersdo form, then further analysis will be done. If we see trends whichcould be helpful, we will also make a report available to parents.

RequestWe need your HELP please. We need to compile a list of every singletherapy and supplement parents have used. Please email me what you havedone or are doing with your child in terms of therapies, treatments,suppleme nts, you name it - we want to know about it. I owe Dr. Mobleythis information by April 14th, so I would appreciate your input byApril 9th.

Even if you cannot remember everything, that is OK - pleasejust email me that which you do remember.Next StepsThe next steps will be as follows: 1) Design initial survey instrument,2) Test the survey via phone interviews on 5 individuals then 10 then50, 3) After 50 surveys are completed the final survey instrument willbe written, 4) Conduct 2,000+ surveys. The final survey may or may notbe phone based. We will also explore an Internet based informationgatherin g system as well. If you would be willing to be a guinea pigfor a phone survey, please indicate so in your email and provide me yourphone number. Your input and time would be very helpful andappreciated! Background - FYII proposed to Dr. Mobley in August at the NDSC convention acomplementary therapy research project. The research I proposed was toobroad. He, instead, came up with the idea to simply survey parents tolearn what is working. Pharmaceutical companies go through a similarprocess when

researching chemical compounds to find breakthroughproduct s.

Surveying patient groups, however, breaks new ground in theresearch world. Usually scientists do not communicate with the"end-user" . (Isn't that amazing? I did not realize this until visitingwith him. From my non-researcher' s perspective, it appears thescientists have made a tremendous error in oversight to ignore such arich source of leads.)I sure hope you will take a few minutes to email me your input. I cannot compile this list without the help of hundreds of trailblazingparents . Let's be heard!!

Thanks,

Edie edie.howard@ comcast.net

Please feel free to call if you have any questions.P/ F: >

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

I tried to reply to the email and it keeps coming back to me...so I am wondering...

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

[DownSyndromeInfoExchange] research

Thought this was interesting. Sally Mother to DS 13Parents, Here is an opportunity to impactcutting edge research!IntroMy name is Edie , and I am conducting a survey for Dr. Mobley,Founder and Director of The Center for Research and Treatment of DownSyndrome at Stanford University, to learn what therapies and supplementsare working to overcome the challenges presented by Down syndrome. Thequestion is simple - "What is working?" We will be looking for clustersof similar initiatives resulting in similar outcomes. If those clustersdo form, then further analysis will be done. If we see trends whichcould be helpful, we will also make a report available to parents.RequestWe need your HELP please. We need to compile a list of every singletherapy and supplement parents have used. Please email me what you havedone or are doing with your child in terms of therapies, treatments,suppleme nts, you name it - we want to know about it. I owe Dr. Mobleythis information by April 14th, so I would appreciate your input byApril 9th. Even if you cannot remember everything, that is OK - pleasejust email me that which you do remember.Next StepsThe next steps will be as follows: 1) Design initial survey instrument,2) Test the survey via phone interviews on 5 individuals then 10 then50, 3) After 50 surveys are completed the final survey instrument willbe written, 4) Conduct 2,000+ surveys. The final survey may or may notbe phone based. We will also explore an Internet based informationgatherin g system as well. If you would be willing to be a guinea pigfor a phone survey, please indicate so in your email and provide me yourphone number. Your input and time would be very helpful andappreciated! Background - FYII proposed to Dr. Mobley in August at the NDSC convention acomplementary therapy research project. The research I proposed was toobroad. He, instead, came up with the idea to simply survey parents tolearn what is working. Pharmaceutical companies go through a similarprocess when researching chemical compounds to find breakthroughproduct s. Surveying patient groups, however, breaks new ground in theresearch world. Usually scientists do not communicate with the"end-user" . (Isn't that amazing? I did not realize this until visitingwith him. From my non-researcher' s perspective, it appears thescientists have made a tremendous error in oversight to ignore such arich source of leads.)I sure hope you will take a few minutes to email me your input. I cannot compile this list without the help of hundreds of trailblazingparents . Let's be heard!!Thanks,Edie edie.howard@ comcast.netPlease feel free to call if you have any questions.P/ F: >

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Miriam Kauk from the ES site is the one who originally talked to Edie on the phone. Edie then joined the ES listerv and posted what she is doing. Here's a link to Miriam's ES blog/site that has some more details on it - http://einsteinsyndrome.wordpress.com/2008/04/01/what-alternative-therapies-are-working-for-you/

Qadoshyah

[DownSyndromeInfoExchange] research

Thought this was interesting. Sally Mother to DS 13Parents, Here is an opportunity to impactcutting edge research!IntroMy name is Edie , and I am conducting a survey for Dr. Mobley,Founder and Director of The Center for Research and Treatment of DownSyndrome at Stanford University, to learn what therapies and supplementsare working to overcome the challenges presented by Down syndrome. Thequestion is simple - "What is working?" We will be looking for clustersof similar initiatives resulting in similar outcomes. If those clustersdo form, then further analysis will be done. If we see trends whichcould be helpful, we will also make a report available to parents.RequestWe need your HELP please. We need to compile a list of every singletherapy and supplement parents have used. Please email me what you havedone or are doing with your child in terms of therapies, treatments,suppleme nts, you name it - we want to know about it. I owe Dr. Mobleythis information by April 14th, so I would appreciate your input byApril 9th. Even if you cannot remember everything, that is OK - pleasejust email me that which you do remember.Next StepsThe next steps will be as follows: 1) Design initial survey instrument,2) Test the survey via phone interviews on 5 individuals then 10 then50, 3) After 50 surveys are completed the final survey instrument willbe written, 4) Conduct 2,000+ surveys. The final survey may or may notbe phone based. We will also explore an Internet based informationgatherin g system as well. If you would be willing to be a guinea pigfor a phone survey, please indicate so in your email and provide me yourphone number. Your input and time would be very helpful andappreciated! Background - FYII proposed to Dr. Mobley in August at the NDSC convention acomplementary therapy research project. The research I proposed was toobroad. He, instead, came up with the idea to simply survey parents tolearn what is working. Pharmaceutical companies go through a similarprocess when researching chemical compounds to find breakthroughproduct s. Surveying patient groups, however, breaks new ground in theresearch world. Usually scientists do not communicate with the"end-user" . (Isn't that amazing? I did not realize this until visitingwith him. From my non-researcher' s perspective, it appears thescientists have made a tremendous error in oversight to ignore such arich source of leads.)I sure hope you will take a few minutes to email me your input. I cannot compile this list without the help of hundreds of trailblazingparents . Let's be heard!!Thanks,Edie edie.howard@ comcast.netPlease feel free to call if you have any questions.P/ F: >

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Hi,

I got the information on the research survey from Sanford from the Downs

Syndrome Asso of Greater Cincinnati.

I can try and check the e-mail address but I sent all I know in the 1st e-mail.

I just thought it would be a good way for us to get some researchers to really

consider TNI.

Sally

[Guest guest]

Is the information on their website somewhere? I looked, but I can’t

find it. (Down Syndrome Assoc of Greater Cincinnati)

thanks

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of sthayes@...

Sent: Monday, April 07, 2008 2:04 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] re: research

Hi,

I got the information on the research survey from Sanford from the Downs

Syndrome Asso of Greater Cincinnati.

I can try and check the e-mail address but I sent all I know in the 1st e-mail.

I just thought it would be a good way for us to get some researchers to really

consider TNI.

Sally