Down Syndorme Research Support Petition - respond by Jan 4

[Guest guest]

Hello,

Parents, we need your help. We are on the verge of proceeding with clinical

trials, but the FDA and pharmaceutical companies are not willing to invest if

there is not a market. , a parent who works with Research DS is

gathering petitions to present. Cody is also collecting petitions from

parents. You can contact either or on them as the info. should go to the same

place.

This is no time to dilly dally...You must decide what you want to do. Some of

you are not interested, that is your choice.

Link to Cody's blog with the same info as pasted below:

http://changingmindsaboutdownsyndrome.blogspot.com/

(Info from - permission was granted to copy and paste)

PETITION REQUEST:

Hi,

Today is the day I need you to step forward with a small act to support Down

Syndrome research. No money, just your name and words are needed.

We are on the verge of revolutionary human clinical FDA trials for medication to

raise learning, memory and communication in Down Syndrome. These trials are

expensive, more than charity can handle, and more than pharma companies will

take on when they are unsure if a market exists. We can show them a market

exists and influence the National Institute of Health to help bridge the funding

gap NOW by having you join a petition and by presenting your commentary!

There is a major grant request under review at the NIH to initially fund a start

up pharmaceutical's FDA trial of a medication developed by Stanford DS

researchers that has improved learning performance in DS mice and shown to be

usable in humans. We MUST get this funded.

In 2009, the NIH provided 18 million dollars for DS research. DS affects about

400,000 Americans. In contrast, autism (which affects 560,000) got 132 million

in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162

million. Why? Because the families of people with these issues are very active

in lobbying for this and being involved at the federal level, and we have not

been. The view from the govt and pharma is that we don't care about developing

the medications that are within reach that could really change our kids outcomes

in life, so they focus elsewhere. Time for things to change!

So join me today in saying this to the NIH decision makers:

We, the members of the Down Syndrome community, strongly urge support for the

development of FDA approved medication to raise learning, memory, and

communication for those with DS. We particularly support this grant

application: the NINDS ative Program in Translational Research - Small

Business Awards (SBIR [u44]), Principal Investigator Moyer, PhD.

Your steps:

1) email me to add your name and email address to the petition. just say " add "

with your name and email address

2) if possible, take 5 minutes and email me a few sentences showing your

support--include your name, address, and telephone #. This will be far more

powerful than just the petition. I will consolidate comments and give to the

head of the grant application process.

3) call or email me if you need more info

Time is critical in this process, so please act now!

Merry Christmas and Happy New Year!

pjbwatson@...

[Guest guest]

Does this research involve stem cells? Peace, D-BNolan ~Age 8~ My Boy, my hero, my superman, who dreams of serving his country just like his dad.Phoebe ~Age 5.5~ The sparkle of my life born with Down syndrome and cystic fibrosis, and destined for greatness. ~~Tea Party in the Park~~ An open discussion homeschool group with a tea party twist~*~65 Roses and Sweet Tea~*~ An open discussion Cf group Warning. I wish you Merry Christmas, and I’m not afraid to say it. ~me~ From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of leoinmomSent: Friday, December 31, 2010 8:14 AMTo: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Down Syndorme Research Support Petition - respond by Jan 4 Hello,Parents, we need your help. We are on the verge of proceeding with clinical trials, but the FDA and pharmaceutical companies are not willing to invest if there is not a market. , a parent who works with Research DS is gathering petitions to present. Cody is also collecting petitions from parents. You can contact either or on them as the info. should go to the same place.This is no time to dilly dally...You must decide what you want to do. Some of you are not interested, that is your choice.Link to Cody's blog with the same info as pasted below:http://changingmindsaboutdownsyndrome.blogspot.com/(Info from - permission was granted to copy and paste)PETITION REQUEST:Hi,Today is the day I need you to step forward with a small act to support Down Syndrome research. No money, just your name and words are needed.We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change! So join me today in saying this to the NIH decision makers:We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS ative Program in Translational Research - Small Business Awards (SBIR [u44]), Principal Investigator Moyer, PhD. Your steps:1) email me to add your name and email address to the petition. just say " add " with your name and email address2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.3) call or email me if you need more infoTime is critical in this process, so please act now!Merry Christmas and Happy New Year! pjbwatson@...

[Guest guest]

No, it is the same research that we are aware of - that of drug therapy to

correct pathways/modify genes.

The pharmaceutical medicine on review has been developed by Stanford DS

Researchers and I think it may be PTZ, the GABA antagonist.

Research DS and the DSRTF are the major private fundraisers for DS.

is working with them - no stem cells. What you find on their websites is what

we're discussing here.

Marsha

>

> Does this research involve stem cells?

>

>

>

> Peace,

>

> D-B

>

> Nolan ~Age 8~ My Boy, my hero, my superman, who dreams of serving his

> country just like his dad.

>

> Phoebe ~Age 5.5~ The sparkle of my life born with Down syndrome and cystic

> fibrosis, and destined for greatness.

>

>

>

> <http://groups.yahoo.com/group/TeaPartyInThePark4Homeschool/> ~~Tea Party

> in the Park~~ <http://groups.yahoo.com/group/TeaPartyInThePark4Homeschool/>

> An open discussion homeschool group with a tea party twist

>

> <http://health.groups.yahoo.com/group/65rosesSweetTea/> ~*~65 Roses and

> Sweet Tea~*~ An open discussion Cf group

>

>

>

> Warning. I wish you Merry Christmas, and I'm not afraid to say it. ~me~

>

>

>

> From: DownSyndromeInfoExchange

> [mailto:DownSyndromeInfoExchange ] On Behalf Of leoinmom

> Sent: Friday, December 31, 2010 8:14 AM

> To: DownSyndromeInfoExchange

> Subject: [DownSyndromeInfoExchange] Down Syndorme Research Support Petition

> - respond by Jan 4

>

>

>

>

>

> Hello,

>

> Parents, we need your help. We are on the verge of proceeding with clinical

> trials, but the FDA and pharmaceutical companies are not willing to invest

> if there is not a market. , a parent who works with Research DS

> is gathering petitions to present. Cody is also collecting petitions

> from parents. You can contact either or on them as the info. should go to

> the same place.

>

> This is no time to dilly dally...You must decide what you want to do. Some

> of you are not interested, that is your choice.

>

> Link to Cody's blog with the same info as pasted below:

> http://changingmindsaboutdownsyndrome.blogspot.com/

>

> (Info from - permission was granted to copy and paste)

> PETITION REQUEST:

>

> Hi,

> Today is the day I need you to step forward with a small act to support Down

> Syndrome research. No money, just your name and words are needed.

>

> We are on the verge of revolutionary human clinical FDA trials for

> medication to raise learning, memory and communication in Down Syndrome.

> These trials are expensive, more than charity can handle, and more than

> pharma companies will take on when they are unsure if a market exists. We

> can show them a market exists and influence the National Institute of Health

> to help bridge the funding gap NOW by having you join a petition and by

> presenting your commentary!

>

> There is a major grant request under review at the NIH to initially fund a

> start up pharmaceutical's FDA trial of a medication developed by Stanford DS

> researchers that has improved learning performance in DS mice and shown to

> be usable in humans. We MUST get this funded.

>

> In 2009, the NIH provided 18 million dollars for DS research. DS affects

> about 400,000 Americans. In contrast, autism (which affects 560,000) got 132

> million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons

> got 162 million. Why? Because the families of people with these issues are

> very active in lobbying for this and being involved at the federal level,

> and we have not been. The view from the govt and pharma is that we don't

> care about developing the medications that are within reach that could

> really change our kids outcomes in life, so they focus elsewhere. Time for

> things to change!

>

> So join me today in saying this to the NIH decision makers:

> We, the members of the Down Syndrome community, strongly urge support for

> the development of FDA approved medication to raise learning, memory, and

> communication for those with DS. We particularly support this grant

> application: the NINDS ative Program in Translational Research - Small

> Business Awards (SBIR [u44]), Principal Investigator Moyer, PhD.

>

> Your steps:

> 1) email me to add your name and email address to the petition. just say

> " add " with your name and email address

>

> 2) if possible, take 5 minutes and email me a few sentences showing your

> support--include your name, address, and telephone #. This will be far more

> powerful than just the petition. I will consolidate comments and give to the

> head of the grant application process.

>

> 3) call or email me if you need more info

>

> Time is critical in this process, so please act now!

> Merry Christmas and Happy New Year!

>

>

> pjbwatson@

>

>