Re: Fwd: Action Needed for Down Syndrome Research

[Guest guest]

I got this notice from my local DS group yesterday. I hate to just copy and

paste the example email and it seems it would take quite an effort to rephrase

what they have written. Do you think it would be just as effective to send a

simple email stating that I am a parent and that I want the NIH to provide

equitable funding for cognitive and other relevant research for DS?

[Guest guest]

yes, i do.

 

I got this notice from my local DS group yesterday. I hate to just copy and paste the example email and it seems it would take quite an effort to rephrase what they have written. Do you think it would be just as effective to send a simple email stating that I am a parent and that I want the NIH to provide equitable funding for cognitive and other relevant research for DS?

[Guest guest]

I think any response is fine. I got this notice from my local DS group yesterday. I hate to just copy and paste the example email and it seems it would take quite an effort to rephrase what they have written. Do you think it would be just as effective to send a simple email stating that I am a parent and that I want the NIH to provide equitable funding for cognitive and other relevant research for DS?

[Guest guest]

I would love to see more funding for research into helping our kids. However, I do not see any value in a national database of people with Ds. Why do they need this?

ette

To: DownSyndromeInfoExchange From: hapytocme@...Date: Wed, 23 Mar 2011 13:19:12 -0400Subject: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

Begin forwarded message:

Date: March 23, 2011 12:55:37 PM EDT

To: hapytocme@...

Subject: Action Needed for Down Syndrome Research

Reply-To: tleyton@...

Having trouble viewing this email? Click here

This is a forwarded message from: Global Down Syndrome Foundation. Please direct all inquiries to: nihresponse@...

URGENT - PLEASE HELP!

YOUR RESPONSE WILL HELP FUNDING FOR PEOPLE WITH DOWN SYNDROME

Dear friends and colleagues,

We are writing this urgent e-mail to ask for your help!

The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a "Request for Information" regarding a national Down syndrome registry, research database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts!

If we have a large and clear response, then the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank.

The deadline to respond is Friday, April 1. Please help us!!

- E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@... by April 1st

- Please cc: us at nihresponse@... so we can keep track of the responses

- Use the Subject header: "RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI"

- Example of a letter of support:

To Whom It May Concern:

It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome. We are pleased that the Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard. We support and agree with the Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank. Please continue to work towards this end. We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome.

Sincerely,

(name)

For those of you who would like to learn more, we invite you to attend one of our webinars. Please follow the appropriate link to sign up:

- Wednesday, March 23, 12:00pm MST

- Thursday, March 24, 12:00pm MST

- Friday, March 25, 12:00pm MST

- Monday, March 28, 10:00am MST

- Tuesday, March 29, 12:00pm MST

- Wednesday, March 30, 5:00pm MST

Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Gratefully,

Sie Whitten

Executive Director, Global Down Syndrome Foundation

(Mom to Sophia Kay Whitten who happens to have Down syndrome)

Down Syndrome Association of Charlotte

Forward email

This email was sent to hapytocme@... by tleyton@... |

Update Profile/Email Address | Instant removal with SafeUnsubscribe™ | Privacy Policy.

Down Syndrome Association of Charlotte | PO Box 34787 | Charlotte | NC | 28234

Ruby Bowdoin

[Guest guest]

for clinical trials.Pat--- Em sex, 25/3/11, ette Beurrier escreveu:De: ette Beurrier Assunto: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome ResearchPara: "DS List" <downsyndromeinfoexchange >Data: Sexta-feira, 25 de Março de 2011, 19:58

I would love to see more funding for research into helping our kids. However, I do not see any value in a national database of people with Ds. Why do they need this?

ette

To: DownSyndromeInfoExchange From: hapytocme@...Date: Wed, 23 Mar 2011 13:19:12 -0400Subject: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

Begin forwarded message:

Date: March 23, 2011 12:55:37 PM EDT

To: hapytocme@...

Subject: Action Needed for Down Syndrome Research

Reply-To: tleyton@...

Having trouble viewing this email? Click here

This is a forwarded message from: Global Down Syndrome Foundation. Please direct all inquiries to: nihresponse@...

URGENT - PLEASE HELP!

YOUR RESPONSE WILL HELP FUNDING FOR PEOPLE WITH DOWN SYNDROME

Dear friends and colleagues,

We are writing this urgent e-mail to ask for your help!

The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a "Request for Information" regarding a national Down syndrome registry, research database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts!

If we have a large and clear response, then the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank.

The deadline to respond is Friday, April 1. Please help us!!

- E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@... by April 1st

- Please cc: us at nihresponse@... so we can keep track of the responses

- Use the Subject header: "RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI"

- Example of a letter of support:

To Whom It May Concern:

It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome. We are pleased that the Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard. We support and agree with the Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank. Please continue to work towards this end. We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome.

Sincerely,

(name)

For those of you who would like to learn more, we invite you to attend one of our webinars. Please follow the appropriate link to sign up:

- Wednesday, March 23, 12:00pm MST

- Thursday, March 24, 12:00pm MST

- Friday, March 25, 12:00pm MST

- Monday, March 28, 10:00am MST

- Tuesday, March 29, 12:00pm MST

- Wednesday, March 30, 5:00pm MST

Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Gratefully,

Sie Whitten

Executive Director, Global Down Syndrome Foundation

(Mom to Sophia Kay Whitten who happens to have Down syndrome)

Down Syndrome Association of Charlotte

Forward email

This email was sent to hapytocme@... by tleyton@... |

Update Profile/Email Address | Instant removal with SafeUnsubscribeâ„¢ | Privacy Policy.

Down Syndrome Association of Charlotte | PO Box 34787 | Charlotte | NC | 28234

Ruby Bowdoin

[Guest guest]

I do remember something about this the last AIA training I went to. It was supposedly needed so that researchers had immediate access to a database to use, including stored cells and blood from the database donors. One of the reasons they say there is so little research into DS is because that issue, no access to what is needed.Example:Student wants to do a study on something particular to DS. This student may have 3 months from beginning to end of the timeframe for this to be done. So in that 3 months time they need to put out a call for blood or whatever from those with DS, then assuming they get enough to answer the first call, they need to set up locations all over to get the blood drawn done, and then sent back to the researcher, any research done for the study. All very tough to set up and accomplish in the timeframe.So the theory is that if they had a national database of stored cells and blood they could get a lot more research done simply due to availability. I asked back then why would they need a database of anyone with DS? I would assume for such studies that each sample would reference back to an anonymous number not a name. I never got a response that made any sense.I think that database refers to the samples and a place to hold them, rather than name, address, etc… that I am thinking when I think of database.   Romero Live simply. Love generously. Care deeply.  Speak kindly. Leave the rest to God Im just me !  Opinionated, Conservative, and Vocal about it all.  Love me or hate me, but don't feel indifferent about me. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of AlmeidaSent: Friday, March 25, 2011 3:19 PMTo: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research for clinical trials.Pat--- Em sex, 25/3/11, ette Beurrier escreveu:De: ette Beurrier Assunto: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome ResearchPara: " DS List " <downsyndromeinfoexchange >Data: Sexta-feira, 25 de Março de 2011, 19:58 I would love to see more funding for research into helping our kids. However, I do not see any value in a national database of people with Ds. Why do they need this?ette To: DownSyndromeInfoExchange From: hapytocme@...Date: Wed, 23 Mar 2011 13:19:12 -0400Subject: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research Begin forwarded message: Date: March 23, 2011 12:55:37 PM EDTTo: hapytocme@...Subject: Action Needed for Down Syndrome ResearchReply-To: tleyton@... Having trouble viewing this email? Click here This is a forwarded message from: Global Down Syndrome Foundation. Please direct all inquiries to: nihresponse@... URGENT - PLEASE HELP! YOUR RESPONSE WILL HELP FUNDING FOR PEOPLE WITH DOWN SYNDROME Dear friends and colleagues, We are writing this urgent e-mail to ask for your help! The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a " Request for Information " regarding a national Down syndrome registry, research database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts! If we have a large and clear response, then the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank. The deadline to respond is Friday, April 1. Please help us!! - E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@... by April 1st - Please cc: us at nihresponse@... so we can keep track of the responses- Use the Subject header: " RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI " - Example of a letter of support: To Whom It May Concern:It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome. We are pleased that the Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard. We support and agree with the Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank. Please continue to work towards this end. We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome. Sincerely,(name) For those of you who would like to learn more, we invite you to attend one of our webinars. Please follow the appropriate link to sign up: - Wednesday, March 23, 12:00pm MST- Thursday, March 24, 12:00pm MST- Friday, March 25, 12:00pm MST- Monday, March 28, 10:00am MST- Tuesday, March 29, 12:00pm MST- Wednesday, March 30, 5:00pm MST Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives. Gratefully, Sie WhittenExecutive Director, Global Down Syndrome Foundation(Mom to Sophia Kay Whitten who happens to have Down syndrome) Down Syndrome Association of Charlotte Forward emailThis email was sent to hapytocme@... by tleyton@... | Update Profile/Email Address | Instant removal with SafeUnsubscribe™ | Privacy Policy.Down Syndrome Association of Charlotte | PO Box 34787 | Charlotte | NC | 28234 Ruby Bowdoin

[Guest guest]

I wouldn't have a problem with an anonoymous register, what I object to is a database of people names, addresses, etc with Ds. What about all that stuff with HIPPA?

ette

To: DownSyndromeInfoExchange From: noliptoday@...Date: Fri, 25 Mar 2011 15:26:04 -0500Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

I do remember something about this the last AIA training I went to. It was supposedly needed so that researchers had immediate access to a database to use, including stored cells and blood from the database donors. One of the reasons they say there is so little research into DS is because that issue, no access to what is needed.

Example:

Student wants to do a study on something particular to DS. This student may have 3 months from beginning to end of the timeframe for this to be done. So in that 3 months time they need to put out a call for blood or whatever from those with DS, then assuming they get enough to answer the first call, they need to set up locations all over to get the blood drawn done, and then sent back to the researcher, any research done for the study. All very tough to set up and accomplish in the timeframe.

So the theory is that if they had a national database of stored cells and blood they could get a lot more research done simply due to availability.

I asked back then why would they need a database of anyone with DS? I would assume for such studies that each sample would reference back to an anonymous number not a name. I never got a response that made any sense.

I think that database refers to the samples and a place to hold them, rather than name, address, etc… that I am thinking when I think of database.

Romero

Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God

Im just me ! Opinionated, Conservative, and Vocal about it all. Love me or hate me, but don't feel indifferent about me.

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of AlmeidaSent: Friday, March 25, 2011 3:19 PMTo: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

for clinical trials.Pat--- Em sex, 25/3/11, ette Beurrier escreveu:

De: ette Beurrier Assunto: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome ResearchPara: "DS List" <downsyndromeinfoexchange >Data: Sexta-feira, 25 de Março de 2011, 19:58

I would love to see more funding for research into helping our kids. However, I do not see any value in a national database of people with Ds. Why do they need this?ette

To: DownSyndromeInfoExchange From: hapytocme@...Date: Wed, 23 Mar 2011 13:19:12 -0400Subject: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

Begin forwarded message:

Date: March 23, 2011 12:55:37 PM EDT

To: hapytocme@...

Subject: Action Needed for Down Syndrome Research

Reply-To: tleyton@...

Having trouble viewing this email? Click here

This is a forwarded message from: Global Down Syndrome Foundation. Please direct all inquiries to: nihresponse@...

URGENT - PLEASE HELP!

YOUR RESPONSE WILL HELP FUNDING FOR PEOPLE WITH DOWN SYNDROME

Dear friends and colleagues,

We are writing this urgent e-mail to ask for your help!

The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a "Request for Information" regarding a national Down syndrome registry, research database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts!

If we have a large and clear response, then the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank.

The deadline to respond is Friday, April 1. Please help us!!

- E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@... by April 1st

- Please cc: us at nihresponse@... so we can keep track of the responses

- Use the Subject header: "RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI"

- Example of a letter of support:

To Whom It May Concern:

It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome. We are pleased that the Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard. We support and agree with the Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank. Please continue to work towards this end. We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome.

Sincerely,

(name)

For those of you who would like to learn more, we invite you to attend one of our webinars. Please follow the appropriate link to sign up:

- Wednesday, March 23, 12:00pm MST

- Thursday, March 24, 12:00pm MST

- Friday, March 25, 12:00pm MST

- Monday, March 28, 10:00am MST

- Tuesday, March 29, 12:00pm MST

- Wednesday, March 30, 5:00pm MST

Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Gratefully,

Sie Whitten

Executive Director, Global Down Syndrome Foundation

(Mom to Sophia Kay Whitten who happens to have Down syndrome)

Down Syndrome Association of Charlotte

Forward email

This email was sent to hapytocme@... by tleyton@... |

Update Profile/Email Address | Instant removal with SafeUnsubscribe™ | Privacy Policy.

Down Syndrome Association of Charlotte | PO Box 34787 | Charlotte | NC | 28234

Ruby Bowdoin

[Guest guest]

That was my issue as well.   It was never addressed as to if it would be anonymous or not, until that is known, I am against it. Romero Live simply. Love generously. Care deeply.  Speak kindly. Leave the rest to God Im just me !  Opinionated, Conservative, and Vocal about it all.  Love me or hate me, but don't feel indifferent about me. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of ette BeurrierSent: Friday, March 25, 2011 3:36 PMTo: DS ListSubject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research I wouldn't have a problem with an anonoymous register, what I object to is a database of people names, addresses, etc with Ds. What about all that stuff with HIPPA?ette To: DownSyndromeInfoExchange From: noliptoday@...Date: Fri, 25 Mar 2011 15:26:04 -0500Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research I do remember something about this the last AIA training I went to. It was supposedly needed so that researchers had immediate access to a database to use, including stored cells and blood from the database donors. One of the reasons they say there is so little research into DS is because that issue, no access to what is needed.Example:Student wants to do a study on something particular to DS. This student may have 3 months from beginning to end of the timeframe for this to be done. So in that 3 months time they need to put out a call for blood or whatever from those with DS, then assuming they get enough to answer the first call, they need to set up locations all over to get the blood drawn done, and then sent back to the researcher, any research done for the study. All very tough to set up and accomplish in the timeframe.So the theory is that if they had a national database of stored cells and blood they could get a lot more research done simply due to availability. I asked back then why would they need a database of anyone with DS? I would assume for such studies that each sample would reference back to an anonymous number not a name. I never got a response that made any sense.I think that database refers to the samples and a place to hold them, rather than name, address, etc… that I am thinking when I think of database. Romero Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God Im just me ! Opinionated, Conservative, and Vocal about it all. Love me or hate me, but don't feel indifferent about me. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of AlmeidaSent: Friday, March 25, 2011 3:19 PMTo: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research for clinical trials.Pat--- Em sex, 25/3/11, ette Beurrier escreveu:De: ette Beurrier Assunto: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome ResearchPara: " DS List " <downsyndromeinfoexchange >Data: Sexta-feira, 25 de Março de 2011, 19:58 I would love to see more funding for research into helping our kids. However, I do not see any value in a national database of people with Ds. Why do they need this?ette To: DownSyndromeInfoExchange From: hapytocme@...Date: Wed, 23 Mar 2011 13:19:12 -0400Subject: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research Begin forwarded message: Date: March 23, 2011 12:55:37 PM EDTTo: hapytocme@...Subject: Action Needed for Down Syndrome ResearchReply-To: tleyton@... Having trouble viewing this email? Click here This is a forwarded message from: Global Down Syndrome Foundation. Please direct all inquiries to: nihresponse@... URGENT - PLEASE HELP! YOUR RESPONSE WILL HELP FUNDING FOR PEOPLE WITH DOWN SYNDROME Dear friends and colleagues, We are writing this urgent e-mail to ask for your help! The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a " Request for Information " regarding a national Down syndrome registry, research database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts! If we have a large and clear response, then the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank. The deadline to respond is Friday, April 1. Please help us!! - E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@... by April 1st - Please cc: us at nihresponse@... so we can keep track of the responses- Use the Subject header: " RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI " - Example of a letter of support: To Whom It May Concern:It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome. We are pleased that the Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard. We support and agree with the Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank. Please continue to work towards this end. We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome. Sincerely,(name) For those of you who would like to learn more, we invite you to attend one of our webinars. Please follow the appropriate link to sign up: - Wednesday, March 23, 12:00pm MST- Thursday, March 24, 12:00pm MST- Friday, March 25, 12:00pm MST- Monday, March 28, 10:00am MST- Tuesday, March 29, 12:00pm MST- Wednesday, March 30, 5:00pm MST Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder. Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives. Gratefully, Sie WhittenExecutive Director, Global Down Syndrome Foundation(Mom to Sophia Kay Whitten who happens to have Down syndrome) Down Syndrome Association of Charlotte Forward emailThis email was sent to hapytocme@... by tleyton@... | Update Profile/Email Address | Instant removal with SafeUnsubscribe™ | Privacy Policy.Down Syndrome Association of Charlotte | PO Box 34787 | Charlotte | NC | 28234 Ruby Bowdoin

[Guest guest]

i agree

 

I wouldn't have a problem with an anonoymous register, what I object to is a database of people names, addresses, etc with Ds. What about all that stuff with HIPPA?

ette 

To: DownSyndromeInfoExchange From: noliptoday@...

Date: Fri, 25 Mar 2011 15:26:04 -0500Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

 

I do remember something about this the last AIA training I went to.  It was supposedly needed so that researchers had immediate access to a database to use, including stored cells and blood from the database donors.   One of the reasons they say there is so little research into DS is because that issue, no access to what is needed.

Example:

Student wants to do a study on something particular to DS.  This student may have 3 months from beginning to end of the timeframe for this to be done.   So in that 3 months time they need to put out a call for blood or whatever from those with DS, then assuming they get enough to answer the first call, they need to set up locations all over to get the blood drawn done, and then sent back to the researcher, any research done for the study.  All very tough to set up and accomplish in the timeframe.

So the theory is that if they had a national database of stored cells and blood they could get a lot more research done simply due to availability.  

I asked back then why would they need a database of anyone with DS?  I would assume for such studies that each sample would reference back to an anonymous number not a name.  I never got a response that made any sense.

I think that database refers to the samples and a place to hold them, rather than name, address, etc… that I am thinking when I think of database.  

 

 

Romero

 

Live simply. Love generously. Care deeply.  Speak kindly. Leave the rest to God

 

Im just me !  Opinionated, Conservative, and Vocal about it all.  Love me or hate me, but don't feel indifferent about me.

 

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Almeida

Sent: Friday, March 25, 2011 3:19 PMTo: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

 

 

for clinical trials.Pat--- Em sex, 25/3/11, ette Beurrier escreveu:

De: ette Beurrier Assunto: RE: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research

Para: " DS List " <downsyndromeinfoexchange >Data: Sexta-feira, 25 de Março de 2011, 19:58

 

I would love to see more funding for research into helping our kids. However, I do not see any value in a national database of people with Ds. Why do they need this?ette 

To: DownSyndromeInfoExchange From: hapytocme@...Date: Wed, 23 Mar 2011 13:19:12 -0400

Subject: [DownSyndromeInfoExchange] Fwd: Action Needed for Down Syndrome Research 

 

 

Begin forwarded message:

 

Date: March 23, 2011 12:55:37 PM EDT

To: hapytocme@...

Subject: Action Needed for Down Syndrome Research

Reply-To: tleyton@...

 

Having trouble viewing this email? Click here

 

 

This is a forwarded message from: Global Down Syndrome Foundation. Please direct all inquiries to: nihresponse@... 

 

URGENT - PLEASE HELP! 

YOUR RESPONSE WILL HELP FUNDING FOR PEOPLE WITH DOWN SYNDROME

 

Dear friends and colleagues,

 

We are writing this urgent e-mail to ask for your help!

 

The National Institutes of Health (NIH) is the largest government funding organization for research.  The NIH has issued a " Request for Information " regarding a national Down syndrome registry, research database and biobank.  They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome.  Every e-mail counts!  

 

If we have a large and clear response, then the NIH will be more likely to help us fund a Down syndrome registry, research database and biobank.   

The deadline to respond is Friday, April 1.  Please help us!!

  

-     E-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank to dsrdrfi@... by April 1st

-     Please cc: us at nihresponse@... so we can keep track of the responses

-     Use the Subject header: " RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI "

-     Example of a letter of support:

 

To Whom It May Concern:

It is morally, economically and scientifically important that the National Institutes of Health increase funding for people with Down syndrome.  We are pleased that the Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation have taken the lead with the NIH in this regard.  We support and agree with the Crnic Institute's assessment of what the parameters should be for our future centralized Down syndrome patient registry, database and biobank.  Please continue to work towards this end.  We appreciate NIH's renewed interest in Down syndrome research and we appreciate NIH addressing the historical and alarming disparity of funding for research that would improve the lives of people with Down syndrome.

 

Sincerely,

(name)

 

For those of you who would like to learn more, we invite you to attend one of our webinars.  Please follow the appropriate link to sign up:

 

-     Wednesday, March 23, 12:00pm MST

-     Thursday, March 24, 12:00pm MST

-     Friday, March 25, 12:00pm MST

-     Monday, March 28, 10:00am MST

-     Tuesday, March 29, 12:00pm MST

-     Wednesday, March 30, 5:00pm MST

 

Down syndrome is the least funded genetic condition by the NIH yet it is the most frequent chromosomal disorder.  Please help us get our fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

 

Gratefully,

Sie Whitten

Executive Director, Global Down Syndrome Foundation

(Mom to Sophia Kay Whitten who happens to have Down syndrome)

   

 

 

Down Syndrome Association of Charlotte

 

Forward email

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Down Syndrome Association of Charlotte | PO Box 34787 | Charlotte | NC | 28234

 

Ruby Bowdoin