RECENT POLL SHOWS AMERICANS SUPPORT DOWN SYNDROME RESEARCH!

An excerpt from the Global Down Syndrome Foundation:

The recent telephone survey of 810 Americans, conducted by Kupersmit Research on behalf of the Global Down Syndrome Foundation, found strong backing for government programs that provide education and training for people with Down syndrome, support for their families, and research into the condition. 

The poll demonstrates a disconnect between funding for people with Down syndrome, which has lagged over the last decade, and the widespread support for spending on the condition. "I am encouraged to learn from this poll that so many Americans join us as advocates of the Down syndrome community," says U.S. Congressman Pete Sessions (R-TX), who co-chairs the Congressional Down Syndrome Caucus. "With additional funding and research, we can continue to build on our quest to provide the resources individuals with Down syndrome need to achieve and reach their maximum potential.”

Down syndrome is the most frequent chromosomal disorder representing an estimated 400,000 Americans.  However, federal research funding from the National Institutes of Health (NIH) for people with Down syndrome was a mere $22 million in 2010, representing 0.0007 of NIH’s annual $31 billion budget. Despite its frequency, Down syndrome research funding has dramatically shrunk, as a percentage of the total NIH budget since 2000. In some years Down syndrome had the largest decrease in funding of any single condition at the NIH.  

Read the entire here

Poll highlights click here.

21 ACT PACKAGE

21 Act Package

The 21 Act package was introduced on July 29th, 2011 in the US House of Representatives by Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Chris Van Hollen (D-MD).  The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

The first bill, the Trisomy 21 Research Resource Act of 2011 (HR 2696), will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank.  These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research.  This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The second bill, the Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695), will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.

The creation of the six Down Syndrome Centers of Excellences would focus on integrating basic and translational research and move findings efficiently toward clinical applications in Down syndrome.  Research conducted on Down syndrome may also have spinoffs that increase knowledge about other areas of research, diseases, and conditions.  Through outreach and communication efforts, the Centers will inform researchers and the public of scientific advances and improvements in medical care.

For more information, please contact Sara Weir, Policy Advisor, NDSS at sweir@ndss.org.

History

The Children's Health Act of 2000 (Public Law 106–310) amended the Public Health Service Act and included a number of provisions that addressed the research and surveillance needs of many disabilities (e.g., autism, traumatic brain injury, Fragile X, juvenile diabetes, asthma, epilepsy).  However, this landmark legislation did not address the significant research, surveillance, and clinical care needs of Down syndrome and thus has been an impediment to progress in the Down syndrome research community over the last decade.  The 21 Act Package attempts to incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) and will foster a better understanding of Down syndrome.

Contact your representative here.


Visit the NDSS to read more!

Let our voices be heard!

"A DRUG FOR DOWN SYNDROME"

"A DRUG FOR DOWN SYNDROME"

To read the full article click here.

Excerpts from the NY Times Magazine article published July 29, 2011.

“This was a disorder for which it was believed there was no hope, no treatment, and people thought, Why waste your time?” says Craig C. Garner, a professor of psychiatry and behavioral sciences and co-director of the Center for Research and Treatment of Down Syndrome at Stanford University. “The last 10 years have seen a revolution in neuroscience, so that we now realize that the brain is amazingly plastic, very flexible, and systems can be repaired.”
“There’s been a sea change in our ability to understand and treat Down syndrome,” Mobley says. “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.”

But Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development. Although it’s difficult to compare the numbers, money from the National Institutes of Health dropped to $16 million in 2007 from $23 million in 2003, before creeping back up to $22 million in 2011. That’s far less than the $68 million slated for cystic fibrosis, which affects an estimated 30,000 people in the United States, at most one-tenth of the 300,000 to 400,000 people who have Down.“The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?”Alan Guttmacher, director of the National Institute of Child Health and Human Development, denies that this is the calculus used by his organization. Yet he offered no clear answer when I asked him why about $3,000 in research dollars is spent by N.I.H. for every person with cystic fibrosis, compared with less than $100 for every person with Down.“The number affected is a fair metric to use,” Guttmacher said. But, he pointed out, most of N.I.H.’s funding decisions are based on the strength of proposals coming from researchers. Advocacy groups for disorders like AIDS, autism and breast cancer have certainly played a role in their gaining increased funding, he said. And perhaps, he speculated, Down suffers from an image problem. “Part of it is that Down syndrome has been around for so long,” he said.

30,000 30,000 17,500 30,000 45,000 400,000 400,000 1.5K 400,000

he U.S.Click here to visit the Down Syndrome Research & Treatment Foundation

Let's get the conversation started? How do you feel about this article?

One thing that always strikes me is how LITTLE research money Down syndrome receives from the National Institutes of Health.  


There numbers are below...

Also, where is "our" advocacy? 
Are we making our voices heard? 
Is it a case of the "loudest one wins"? 

What are your thoughts?

CONGRATS TO RIA & BILL!

Bill & Ria recently embarked on a mission to raise awareness and research funding for the +15 campaign. (The +15 campaign (through the Down Syndrome Research & Treatment Foundation) funds research to improve learning, memory & speech for individuals with Down syndrome.)

Bill & Ria raised $2211 for campaign putting theta fundraising efforts in 1st place and winning an iPad that will be donated to their son Matthew's special needs class.

Bill & Ria raised monies through yard sales, pretzel sales & donations with the help of wonderful volunteers.

One person can make a difference!

Lilliespad.com has some great videos to see children using the iPad and how it is a great resource for learning.

iPad Help is a list of resources for parents to seek funding for an iPad for their child.

+15 CAMPAIGN!

plus15 is the campaign to
improve learning, memory, and
speech for people with Down
Syndrome.

plus15 will make it possible
for people with Down syndrome
to live more independent lives —
with more opportunities than
ever before.

Donate $15 & Tell 15 friends!

How many people have Down syndrome?

About one in every 800 American babies is born with Down syndrome, and it is estimated that about 350,000 people in the United States, and just under 6 million people worldwide live with this condition today. There is a false impression that pregnancy screening has eliminated or substantially reduced the incidence of Down syndrome in the population. Despite years of screening, the Down syndrome population in the country has remained stable.

Isn't Down syndrome too complex to treat and once someone is born with it, isn’t it too late?

For many years, scientists believed that Down syndrome was too complex to understand, and they believed that there was no way to reverse or reduce the severity of cognitive impairment. However, scientific advances have made it possible to understand how specific genes are linked to specific abnormalities in the structure and function of the brain. Although the 21st chromosome has hundreds of genes, researchers believe that there may be only a handful that significantly impact cognition. Using advanced techniques and methods, researchers believe they will be able to isolate the effects of these specific genes and determine how their expression in the brain can cause problems with cognition. As researchers define the mechanisms responsible for cognitive dysfunction, they can begin the process of discovering treatments that enhance brain function, including cognition. Today we can boldly predict that Down syndrome is not too complex to understand and it is not too difficult or too late to treat.

Is a treatment a cure?

No. Once a baby is born with Down syndrome, he or she will always have an extra chromosome. The objective of the treatment is to improve cognition by improving learning, memory, and speech for individuals with DS. No one can say for sure how much cognition could be improved. However, even a modest improvement of 10-20% in cognition could have enormous impact on the life of a person with Down syndrome. Because the majority of individuals with Down syndrome fall into the mild to moderate range of cognitive impairment, a 10-20% improvement would enable most persons with Down syndrome to function much more independently in school and the workplace.

To learn more about +15 click here

To learn more about research and treatment click here