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By Teresa Conrick
Here in Chicago, they have been reporting on the SPARK Autism, national database. This from our local ABC, channel 7 Chicago:
RESEARCHERS AT RUSH MEDICAL CENTER CREATING NATIONAL DATABASE TO STUDY AUTISM Sunday, December 18, 2016
∗ Autism is one of the fastest growing developmental disorders in the United States. It now affects one in every 68 children and on in every 42 boys.
∗ That's one reason why there is an intense push to try to find treatment and a possible cure. There is a major research study taking place at Rush Medical Center in Chicago.
∗ a ground-breaking research study, which is now gathering genetic information on autistic individuals. They're creating a national database.
∗ Every day we struggle with it and every day we hope that, in the back of your mind, that studies like this are going to help us," said Tony Belmonte, Jack's father.
∗ Nation-wide they are hoping to register 50,000 individuals on all levels of the autism spectrum. There is a concentrated effort now to get more minorities to sign up for this research.
At the bottom of the article, you'll read this: For more information about the Rush autism study, visit www.sparkforautism.org/rush. There you will go to a website which is not RUSH Hospital. To find out more, click on About SPARK on the bottom of that page. There you will see that, SPARK stands for ‘Simons Foundation Powering Autism Research for Knowledge,’ and the mission is simple: we want to speed up research and advance our understanding of autism to help improve lives. If you or your child has a professional diagnosis of autism spectrum disorder, learn more about SPARK here . If we keep following them, we can read even more about this plan - SPARK aims to build a research community of tens of thousands of individuals with autism and their families, who will be asked to share medical and genetic information with scientists and to agree to be contacted about future research studies.
For the person who knows little about the who, what, when, where and why of AUTISM, this could look to be promising BUT for most of the rest of the world, people are not accepting this approach anymore. The search for genes is NOT, nor has it EVER been helpful "to find treatment and a possible cure." Autism Speaks did this same thing, came up with a gene depository to look like they are using their money for something helpful. Sadly, this approach has done NOTHING for the tens of thousands of families who have children and now, young adults, who suffer with painful GI disease; seizures; inability to speak or communicate in a meaningful manner or, at all; extreme sensory disturbance; executive functioning disability; debilitating obsessions, compulsions and tics; heartbreaking self-injurious behaviors; and the daily struggles with social cues. This type of genetic research is going in the WRONG direction.
Back to Rush Hospital, where I am lucky to have an excellent neurologist that Meg has been seeing. When he saw Meg last, he was so impressed with how much better she was both medically and socially. Meg has been seizure-free now for over 18 months. Yes, she is anti-seizure medications (and still was having occasional seizures) but it has been the focus on the MICROBIOME that we have seen the most help and promise for my severely affected daughter. In that conversation at Rush, I told Meg's doctor about my keen interest on the research regarding the Microbiome and my hopes for further research and treatments. He mentioned that Rush was doing research on the Microbiome but not yet on Autism. The research was instead being conducted on Parkinson's Disease. I am a big believer that theses studies on Parkinson's and Autism have parallels and will help each other.
So instead of the above, GENE, wild goose chase, follow me instead. Here is that RUSH Hospital study about Parkinson's and the Microbiome...and Autism links:
BOSTON & PASADENA, Calif.—Axial Biotherapeutics announced Dec. 1 that researchers from the California Institute of Technology (Caltech), led by Dr. Sarkis K. Mazmanian, the company’s scientific founder, have discovered a novel biological link between the gut microbiome and Parkinson’s disease (PD)....gut bacteria were shown to promote hallmark disease processes including inflammation of the nervous system and motor dysfunction. The findings suggest that targeting the gut microbiome may provide a new approach for diagnosing and treating Parkinson’s disease...bidirectional communication between the gut and the brain has been implicated in neurological disorders such as anxiety, depression and autism spectrum disorders.
NOTE- Since the time I wrote this, the Chicago Cubs HAVE WON the World Series!
Overall, the main finding from the study is that adults with autism may have substantially elevated risk for Parkinson’s disease….We find a high frequency of parkinsonism among ASD individuals older than 39 years. If high rates of parkinsonism and potentially Parkinson’s disease are confirmed in subsequent studies of ASD, this observation has important implications for understanding the neurobiology of autism and treatment of manifestations in older adults......
Here we see Autism Speaks possibly moving in the RIGHT direction -
At the 2016 International Meeting for Autism Research (IMFAR), Dr. Luna shared the earliest findings from their Autism Speaks research – the first analysis of the microbiome of a child with autism and GI issues – together with a comparison to the microbiome of his unaffected sibling.
From this small pilot test, they found some significant results. The analysis showed that the child with autism – but not his sibling – carried a number of distinctive intestinal bacteria that earlier research had associated with autism. What’s more, these bacteria spiked in numbers during periods when he experienced significant worsening of autism symptoms – including self-injury.
It therefore seems plausible that exposure to chemicals may affect the normal colonisation of the gut by bacteria, with effects on host physiology later in life. Therefore, chemical-induced perturbations of the composition of the GI microbiota may constitute an underestimated mechanism by which they interfere with human health...Three types of "chemicals" often cited in Autism research and by parents are 1- Vaccines , 2- Pesticides and 3- Mercury...
Some more hopeful directions for 2017:
- Gut check: Newest microbiome startup concentrates on autism, Parkinson’s disease
- Baylor investigates antibiotic use, children’s improved autism symptoms
- Microbes in your gut matter in Autism
- Single species of gut bacteria can reverse autism-related social behavior in mice
- Study provides clues to improving fecal microbiota transplantation
As we welcome the new year, let us welcome the new and better direction of AUTISM research. As far as the SIMONS Foundation and their SPARK gene forever odyssey, here's my best advice:
YOU'RE GOING THE WRONG WAY!