Down Syndrome Cognitive Test

Saturday, 26 October 2013

When you enter the land of IEPs you'll find your child having to go through a number of tests and evaluations. These are to determine which one of the 13 categories the child falls in to be eligible for special education services. In some states and school districts you can opt out of the actual IQ part of the test and just rely on other assessments to evaluate, but in other schools its not as easy to opt out.

These standardized tests really don't seem to truly show a child's abilities; they don't seem show an accurate picture of your child either.

A few years ago neuroscientists at the University of Arizona developed a battery of tests to aid in the assessment of cognitive abilities of people with Down syndrome. What's different about these tests is they are a series of computer exercises that are not language dependent.

Down syndrome affects 3 major parts of the brain: the prefrontal cortex, hippocampus and cerebellum. The tasks that are on these tests hone in on particular functions of the brain regions.

"The hope is that the test battery is a way to figure out, for any given child, where they fit developmentally within each of these particular domains. The battery will give us a handle on understanding that profile so you might be able to target an intervention in a specific way for a given person."

Right now these tests are useful for clinicians and researchers to use as a before-and-after tool for assessing interventions and figuring out which therapies might work best. Drugs are being developed and tested in phase 1 clinical trials for cognition intervention and the use of assessment tools like this will help with research studies.

I'm not sure how wide-spread the use of these tests are yet; the articles I found were from 2010, but if these tests seem to more accurately show the cognitive abilities of people with Down syndrome, because in large part of not being dependent on language demands, I wonder if there is anything in the works to use this test in a school setting for educational testing. It seems like schools would get a lot of value from this battery of tests and that the results would be more reflective of the individual student's abilities.

You can read the full report of the Development and Validation of the Arizona Cognitive Test Battery for Down syndrome in the Journal of Neurodevelopmental Disorders.



 

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Running The Air Force Marathon

Wednesday, 18 September 2013

Research Down Syndrome funds and supports scientific research at leading institutions that are studying the basis of intellectual impairments in Down syndrome. One of the ways they are doing this is with the RDS Runners program. They are charity sponsors with various marathons around the country.

Last year my husband, Joe, completed his first marathon -the Air Force Marathon - as a runner for RDS. He also completed the Disney Half Marathon in Jan. Joe will once again be running in the Air Force Marathon on Sep 21st and raising money for Research Down Syndrome.

Down syndrome is one of the most common genetic conditions, but one of the least funded in the NIH. Research in Down syndrome isn't just DS-specific but extends to research connected with Alzheimer's and leukemia.

There are several current research studies happening now that are focusing on the why and how having the extra chromosome causes delays for people with Down syndrome; including how to 'turn off' the extra expression that happens in specific genes.

Research like this could possibly lead to medical therapies for intellectual disabilities to help improve memory and cognition which will allow people with Down syndrome to be more independent.


If you are able to donate to Joe's Crowdrise page for the marathon it is much appreciated!

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Molecular Roots of Down Syndrome Unraveled

Wednesday, 27 March 2013

Researchers have discovered the cause of impaired learning and memory in individuals with Down syndrome. A protein called SNX27 is at the root of the decreased cognitive function. A person with an extra 21st chromosome produces less of the SNX27 protein which disrupts brain function.

It sounds so fascinating that they have been able to pinpoint the why and where of cognitive deficits -explicitly to this protein.

Further research has shown when this protein was restored in mice they showed improved cognitive function and behavior.

How exciting is that?!

For people who don't have 20/20 vision they can wear glasses, contacts, or have laser eye surgery to improve their vision. For people that have hearing problems they can, if appropriate, have a cochlear implant, or wear a hearing aid, to improve their hearing. Now science could be on the cusp of figuring out how to improve cognition and memory for people with Down syndrome. It's the same thing - improving their quality of life. I think it's so wonder that research is being done on this subject at all.

We aren't talking about a cure here; this just could be something that has the potential to help people with Down syndrome have improved cognition and that could help them in so many different ways in their lives.

Kayla struggles so much with academics ... if they found a way to tweak that for her? To bring that protein back to typical levels? Oh the possibilities...

This will be research I hope to hear more about in the very near future.

 

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Disovery Toys and Matching 3:1

Tuesday, 12 March 2013

If you read my blog I know it comes as no surprise that March 21 is known as World Down Syndrome Day (WDSD). I blogged about it here.

WDSD is celebrated internationally on March 21 because the date, also written as, 3/21 symbolizes 3 copies of the 21st chromosome.

I am an independent consultant with Discovery Toys. I became a consultant when Kayla was 8 months old. I didn't sign up as a consultant for an extra/2nd income for our household (I don't kid myself on my abilities to be a salesperson!); I just really, really liked their products and wanted to get them at the consultant discount. I liked that they are durable, grow with the child, have more than one use, lifetime guarantee, and replacement parts.

I haven't been active since we moved from NM to MD and from MD to SC. As I said, I was never a consultant to make money!

I am going to donate 21% of all sales made from now through Mar 20th to Down Syndrome Research & Treatment Foundation.(DSRTF)

If you've got birthdays coming up, or like to shop ahead of time for the holidays, or if you are a teacher or therapist and are looking for some new tools/products to use ... take a look through the catalog and see if anything catches your eye!


Why donate to DSRTF? Because just like last year, all donations made on March 21 will be matched 3:1. So my 21% of total sales will be tripled.

Last year almost half a million dollars were raised for cognition research with the 3:1 matching donations.

There will also be a DS Cognition Research 101 webinar on March 21 at 10AM PT/1PM ET. Register here and learn about Down Syndrome Cognition Research - the science, the goals, and the results so far. Years and years ago no one thought it was even important, or worth it, to explore Down syndrome cognition. Now? There are clinical trials under way and researchers are making advancements toward treatments that could improve learning, memory, and speech for people with Down syndrome.

Research is already shedding light on improving neurological deficits.

Improvement in each of those areas would be so beneficial to Kayla ... more clarity in speech is always a good thing! Being able to communicate effectively and clearly is so important. If we could work on improving her cognition and memory she would be that much more likely to lead an independent life.


 

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Run Disney

Monday, 10 December 2012

A few months ago Joe ran in the Air Force marathon - his first and not his last. He's signed up to run another marathon next month. This time we'll be joining him (for the location; not to actually run with him) for the runDisney Marathon at Walt Disney World. How could the family not go along?

The weekend of the marathon worked out great for us because Kayla doesn't have school that Monday; perfect for the travel day back home.

Guess we'll have to make some time to explore the new Fantasyland while we're there!

Once again Joe is running for/with the Research Down Syndrome (RDS) Runners. RDS supports scientific studies directed towards understanding the sources of cognitive difficulties in people with Down syndrome.


 

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Running for Down Syndrome Research

Wednesday, 5 September 2012

I'm not a runner, but my husband is becoming one. He ran the Cooper River Run earlier this year and is already signed up for next year.

He's currently preparing for his first marathon. He'll be participating, (appropriately enough since he is active duty Air Force thankyouverymuch!) in the Air Force Marathon.

Running and Down syndrome research have come together in the form of the Research Down Syndrome Organization. RDS is a non-profit organization supporting Down syndrome cognition research.

One of the ways they raise money is through running - Research Down Syndrome Runners/Race for the Extraordinary.

There are RDS Runners teams participating in races all across the country.

One of these races is the above-mentioned Air Force marathon that Joe is already signed up for. It was easy to connect the two and have Joe join the RDS Runners for his first marathon.... what could be better than running to raise awareness, support, and funding for Down syndrome cognition research?


There is also a team running in the Disney Marathon in January - he's planning on signing up for that too -quick family vacation to Orlando!

Here is Joe's Crowdrise Fundraiser page for RDS Team in the Air Force Marathon.

Good luck Joe!

 

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