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!

NEW DOWN SYNDROME HEALTH GUIDELINES!

New Down Syndrome Health Guidelines link:

Click here.

(American Academy of Pediatrics)

This would be a great guide to print and add to your child's medical folder and make a copy for your child's pediatrician. 

It's also really important for parents to be proactive when it comes to their child's health. Sometimes we assume that because the doctor is the doctor they know exactly what do to and when and while in a perfect world they should it's still a good idea to keep a copy of medical records, doctor appointments, specialists, surgery dates etc. 

Use the guide to keep your child on track and you "in the know". 

(Thank you to Ria & Adrienne) 

"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?

FRIENDLY REMINDER: NO PARENT GROUP TONIGHT!

Hi families!

We will NOT be having a monthly parent meeting tonight since Tuesday was the play date and next weekend is the FAMILY DAY: ICE CREAM SOCIAL!

Have a great weekend and see you all next Saturday!

TODAY'S PLAY DATE!

A big thank you to Michelle for hosting the play date today!

The kids were able to play inside and while the moms had a chance to sit back and visit!

And then an indoor picnic for lunch!

GROUP LOGO VOTE!

A lovely graphic designer, Monica, offered her talents (free of charge) to design a logo for the Franklin County Down Syndrome Group. Below are her logo ideas. I would love for you to leave a comment on your favorite and the winner will be used on group info, brochures, t-shirts etc.

LOGO #1

LOGO #2

LOGO #3