OSR#1 Not A Dietary Supplement, Serious Side Affects Warns FDA

The Chicago Tribune is running a follow up story on the status of OSR#1, a drug that was peddled as a "cure" for Autism and a dietary supplement.  It seems the FDA has looked into the "supplement", and found that it contains no dietary benefits, and instead is a powerful chelator, binding to heavy metals to remove from the system.  That, in and of itself is dangerous, if chelation is not necessary, as the body requires heavy metals to survive. 

When the Tribune investigated this drug last year, they specifically asked the company developing this substance, CTI Science Inc., for the research they claimed had proven the safety and efficacy of the product.  The company stopped returning phone calls at that point. 

But now the FDA has had a look at the research (on lab rats), and found that there were some side effects recorded:  soiling of the anogenital area, alopecia (hair loss) on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas" and a rapid increase in normal cells contained in the lymph nodes. 

Ellen Silbergeld of Johns Hopkins University has warned against the substance, and Pharmacologist Dr. Arthur Grollman identified the substance as a powerful chelator that can be toxic if only normal amounts of heavy metals are found in the body.

The FDA has denied the labeling of this substance as a "dietary supplement" because it does not bear or contain a dietary ingredient.  Therefore it is, in fact, a new drug, which requires proof of safety and efficacy through clinical trials.  This process is very lengthy and expensive, as noted by Richard Mailman of Penn State University, and is that way for a reason.  It needs to be proven safe, and reputable drug companies take the time and pains to make sure that is the case.  It seems that CTI Science Inc. has failed to meet these standards.

I'm not going to judge the efficacy of OSR#1, but without any proven safety research and the long list of possible side effects, I would say that it would be irresponsible for any parent to give such a substance to their children. 

And to Mr. Boyd Haley, the creator of this snake oil, I say "Shame on you". 

Technology, Interaction, and Autism: iPods and Beyond

Businessweek has posted an article on the fight against Autism going High Tech, meaning that technology is becoming the avenue autistic people are using to overcome their social isolation brought on by the disorder.  Mentioned there are a number of different devices that are becoming more mainstream:  iPods and apps for Autism (229 and counting), robots instead of people for reliable, comfortable communication, and other tools each provide an autistic child with an opportunity to work through their disability and interact with others. 

I've posted several reviews on apps on the iPod/iPad that help autistic children learn, and each my son has enjoyed.  I still maintain that Apple's true potential in their popular multitouch platform has yet to be tapped or even advertised, and that is it's ability to enable those who are disabled.  But this is more than finding a technological solution to a problem, it's about finding how autistic children interact, and catering to that method.

For instance, aside from robots that have preset interaction ideas, dogs can provide a save interaction variable for autistic children.  That's because dogs are perhaps more straightforward in their responses, and remain very honest and predictable in how they will interact with children.  That is, in general at least.  There are some exceptions to that rule, but by and large dogs provide a predictable interaction experience for autistic children. 

But what about vacations?  Many parents with autistic children tend to shy away from vacations in general, and particularly large resorts with lots of people.  I've had several parents post comments about how they would love to have their children go to Disneyland or Walt Disney World, but fear the reaction with so many people in such a close space. 

Remember that Disney has a policy:  Every guest is to have a good experience.  As such they have a special pass for those who are unable to wait in long lines for extended periods of time.  Those parents with an autistic child can get one of these passes for up to 5 people plus the special needs individual (if I remember right, it may just be 5 people).  This pass was a life saver for my family, as my son was able to ride his now favorite ride (other than the Carousel), Finding Nemo, without having to wait the full 40+ minutes to get in. 

Disney also has another interaction activity mentioned by the Businessweek article:  "Turtle Talk with Crush".  Apparently this activity, where children get to talk with Crush the Turtle from Finding Nemo has been very well received by children with lower functioning autism, and they even come away repeating more of the words that Crush has said.  My family didn't get a chance to see this activity (it's in Disneyland's California Adventures park), but you can guarantee that we will be there the next time we go to Disneyland. 

There is a lot happening with Autism in this day and age.  More people are becoming aware of the disorder, more parents are getting timely information on how to manage the disorder, genetic markers and causes are being discovered, potential treatments are being investigated, acceptance is becoming more common, and technology is quickly enabling those with Autism to interact with those who are not more readily.  It's an exciting time for parents of children with this now very wide spread disability. 

The New Mac Mini: The Impression

Today Apple announced their new Mac Mini design, in the midst of the iPhone 4 pre-order issues, with an aluminum body and a squat look, much like the Apple TV.  It looks so much like the Apple TV that it more or less points out the direction I think they want the Mac Mini to go:  Media Center. 

Why do I think it's destined to the media center designation?  Well, it could be because of the HDMI port on the back.  That, and I've been thinking of using the Mac Mini as a content center for a while.  With Bluetooth keyboards and mice, the jump isn't that difficult.  That, and any Apple Remote will work without a problem. 

Currently I use an Apple TV for our main Media Center, with my 20" iMac in the office for casual viewing.  But I was thinking now nice it would be to have a Mac Mini (or Mac Mini Server) as the main Media Center, with satellite media centers, like that Apple TV, for other TV's in the house. 

It would also make a good gaming system, with the beefed up graphics and everything that comes with it.  I've been looking for a solution that would unify all media into one device.  With media devices like the Mac Mini, I can see a good future.

So for those of you out there that don't think they would get an Apple device, what solutions do you have?  Any Linux boxes out there with Mythtv installed?  Windows Media Centers?  Let me know what works for you, and why.

Why So Many Genes in Autism Research? Copy Number Variations

Genetic Autism Research has been plagued by confusing results:  to date there are over 22 genes whose variations have been linked to Autism, and it seems to keep growing.  And the additional problem of different variations within the genome has been problematic when trying to identify direct causation.  So much so that many in the Autism community (mostly those who remain staunch supporters of the vaccine cause) have pointed to these variations and confusing results as proof that autism is not genetic. 

So why are there so many different genomes that are linked to Autism?  Well, as Businessweek is reporting, and as located in the June 10th issue of Nature, it seems to be linked not to genes directly, but to the results of copying DNA, known as copy number variations.  It seems that as the genes are copied, either there are too many copies of the gene, or too few copies of the gene when compared to the control group of neurotypical people.  This means that the DNA duplicating system is creating new sets of genes that are "mutated", in that their sequences are either duplicated or overly short. 

The interesting thing about this research is that the results of the copy number variations can be inherited from parents, or new variations can be created that are independent of the parental genetic contribution.  The results therefore can be compounded and become more prolific, either by inheritance or through individual mutation. 

It's possible to manage the effects with medication, though current research sees medical solutions to be further off than within the next couple weeks (or years).  But the research itself is pretty stunning, providing hope that Autism can finally become understood as a genetic trait that happens through a natural, genetic process, instead of some government or industrial conspiracy. 

First Annual Train4Autism Neighborhood Yard Sale

The Utah Autism Coalition has announced the Train4Autism's first annual Neighborhood Yard Sale on Saturday, June 26th from 8 AM to Noon at Mountain Oaks Circle, Cottonwood Heights (8080 South 3715 East).  15% of the proceeds will go to Train4Autism, while 85% of the proceeds will go to the Utah Autism Coalition's fund to provide treatment, mentoring, and support programs for children with Autism. 

For those interested in volunteering or providing donations, you can call 801-618-6097 and arrange the details.  This is just for those within the Salt Lake Area (since that is where the sale will be).  The last day for pick-ups will be June 24th, or you can drop off your donations to the drop off center.  Call the above number for more details. 

This marks a new chapter in the Utah Autism Coalition's history, as it is now working to provide support for families with Autism in a more direct way.  With the help of sales like these and grants, they are working hard to provide for those with Autism in the community.  The sale is your chance to get involved and show your support. 

For more information about the Utah Autism Coalition, check out their website.

Autism Drug In the Works: KM-391 by Cellceutix in pre-Clinical Studies

Marketwire posted an update from Cellceutix on their new autism drug's accelerated release schedule, and it's move to the pre-clinical trial stage.  The new drug is a completely new compound, dubbed KM-391 (for now, at least).  The drug affects brain plasticity, serotonin levels, and behavioral function, which were parameters that were chosen specifically for autism.  The results of the pre-clinical tests should be available within a couple of weeks, as opposed to a couple of months, which is good news for those wondering how effective it will be, and whether or not it will be the new "wonder drug" being hoped for in the need to treat autism. 

This drug, from what I can read (I have yet to see the details from the pre-clinical trials, or any further clinical trials), is a method of managing the symptoms of autism, much like drugs are used to manage ADHD.  It is not a cure, in that it doesn't change the fundamental genetic structure of the person with Autism (which would be required to rid the body of Autism completely, as it is genetic).  Therefore, any hopes that this will be the silver bullet for Autism, or will fundamentally change the way someone with Autism thinks should be kept on hold.  We have yet to see the results of the drug trials, which I will be very skeptical about until proven otherwise.  Not because I don't think it will work, but rather I want to know what side effects are present as this will be changing the chemical makeup of the brain. 

Needless to say, the Autism community has been interested in this drug for quite some time, and it's possible that it could bring a lot of children into a managed level of behaviors, allowing them to share the world they are in with others.  We shall see. 

Biological Diagnosis of Autism: A Urine Test

The UK's Daily Mail is reporting a potential new test for Autism that will show, biologically, whether a child has the condition.  Apparently, the urine of an autistic child is chemically different than neurotypical children, and therefore a simple urine test could possibly be used to diagnose the condition.  This is based on the gastrointestinal disorders that often accompany children with autism, which cause a different bacterial makeup within the child's digestive tract. 

This will work with some children that have gastrointestinal disorders that accompany their autism, though as a catch all for autism in general I don't see it as being very effective.  Still, it is yet another source of autism diagnosis that identifies the condition as a biological and not purely behavioral condition, pounding another hole in the argument that Autism is the result of poor parenting and therefore should not be covered as a diagnosis. 

Amano Chocolate and the "Guess The Origin" Contest

On a lighter note, I thought I would mention the Guess the Origin Contest over at Amano Artisan Chocolate, a Utah-based chocolate maker.  For those who love chocolate, and I don't mean the waxy stuff you get at your local Shop n' Rob, but real chocolate with actual flavor, this contest may just be for you.  They are currently working with a new chocolate, and they want you to guess from where the beans have come!  The winner will receive $830 worth of chocolate, or ten bars a month for a year. 

Here is the contest information from their website:

We are in the midst of releasing a brand new chocolate.

To celebrate, we are giving away a free one year supply of chocolate to one lucky individual who guesses the origin of the cocoa beans we used. How much is a "one year's supply"? The answer: 10 bars per month for a year. This is over $830 of chocolate!

To enter, simply fill out the entry form. When the bar is released, we will hold a drawing among all those who guessed correctly. If you win, you will be the envy of your friends, neighbors, and just about everyone else!

What do the beans taste like?

They have a beautiful rich chocolate flavor with some very nice fruity notes. We have made a number of test batches and the chocolate made from these cocao beans is wonderfully complex. The finished chocolate is unlike any of our current chocolates. We know you will enjoy it.

The cocoa beans arrived a little over a month ago. Since their arrival, we performed a number of test roasts to find that beautiful "sweet spot" where the cocoa bean's peak flavor is expressed. Once we found the perfect roast, we made the chocolate. We are very happy with the results.

As with all the chocolates we make, we start only from the highest quality and most flavorful cocoa beans available. We carefully roast them in our antique cocoa roaster, remove their shell, then slowly stone grind them in our antique German melanageur turning them into delicious chocolate.

This is one chocolate you are sure to love. I wish each of you personally, Good Luck!

Feel free to sign up, and give it a guess!  It's definitely worth the effort, and who knows, you may win!

Microglia Cells, The Immune System, and Behavior

The Journal Cell reported research done by Nobel Prize winning Mario Capecchi and his team here at the University of Utah regarding the pathological grooming of mice and their cure.  The research draws a direct connection to behavior in humans and the immune system, or more specifically with microglia cells that are generated in bone marrow to defend the nervous system.  It seems that in mice with a mutated Hoxb8 gene, the need to groom oneself to the point of hair removal can be cured by a bone marrow transplant to replace the microglia cells.  The mice, so treated, were cured permanently from their pathological need to groom themselves, resulting in normal behavior.  The news is staggering, because it ties mental health treatments to immune system treatments (similar to cancer patient treatments), rather than chemical treatments through drugs.

So why all the excitement?  Because it can open the doors to a number of new treatments that will be done once to cure a host of behavior disorders.  Obviously more research is needed, but it is possible that Autism could be cured with a bone marrow transplant, or at least the behavioral aspects of Autism could be cured, without the threat of altering the mind of the autistic person. 

The really exciting thing about this research, if it can be linked to Autism and develop a treatment for it, is that yet another reason for insurance companies not to recognize autism as a diagnosis has been removed.  It also will, potentially, make treatment for Autism less expensive if the behavior can be "cured" through bone marrow transplants or some other one-step procedure as opposed to years of expensive therapy.