Thank You!

Posted on Oct 23 , 2013 in Blog

With yesterdays totals added, we raised $17,153.74 this year. That pushes us to a GRAND TOTAL of $100,382.047 raised to date!!!


Discovery of Abnormal Gene Pathways Suggests Targets for Future Medicines

Posted on Mar 29 , 2012 in Blog

Researchers have found evidence that the disordered early brain development seen in young children with autism results from problems cascading through entire pathways of gene activity.

These networks involve hundreds of genes. Some control the number of brain cells created in a very young brain. Others are responsible for detecting and correcting problems during crucial periods of prenatal brain development.

In older brains affected by autism, the researchers saw a significant uptick of gene activity directing “repair and remodeling.” They propose that this may help explain why some individuals with autism improve in function as they get older.

“These findings are exciting because they point to genetic pathways involved in brain development and reorganization that could lead to the discovery of targeted pharmaceutical interventions,” says lead researcher Eric Courchesne, Ph.D., of the University of California-San Diego Autism Center of Excellence. For example, future medicines might be designed to alter gene activity in ways that promote repair or otherwise normalize brain development.

The research, published today in PLoS Genetics, was funded in part by Autism Speaks. It also used genetic and clinical information from Autism Speaks Autism Genetic Resource Exchange (AGRE) and postmortem brain samples from Autism Speaks Autism Tissue Program (ATP) and the Developmental Brain Bank of the National Institute of Child Health and Human Development. These three bio-repositories have become crucial resources for advancing autism research worldwide and hold particular promise in the development of safe medicines that may someday relieve autism’s core symptoms.

“The experimental methods featured in this study are becoming increasingly valuable approaches to clarifying the molecular basis of neuro-anatomical changes observed in autism,” says Rob Ring, Ph.D., Autism Speaks vice president of translational research. “This study also highlights our Autism Tissue Program as an essential resource in sustaining tissue-based research in autism.”

Today’s report builds on Courchesne’s previous research, which associated autism with a prenatal overgrowth in the number of nerve cells, or neurons, in the brain’s prefrontal cortex. This region of the brain plays a critical role in social, communication and cognitive skills. That study, likewise supported by Autism Speaks, led Courchesne and his colleagues to investigate broad patterns in gene activity that might explain the early abnormal overgrowth.

In the follow-up study reported today, they compared the postmortem brain tissue of 33 children and adults with or without autism. They looked for differences in gene activity across the entire genome (a person’s complete set of genes, or DNA instructions). They also looked for extra or missing sections of genes. Such defects can often explain why a given gene has abnormal activity.

“We found 102 genes that were abnormally expressed in children with autism, and these genes are involved in establishing the correct number of cells and the way they are organized,” Courchesne says.

The researchers saw very different patterns of gene activity in the brains of adults affected by autism. There, they found increased activity among genes that foster the repair of neurons.

“That raises the possibility that there is a second phase of autism when the brain is making an active effort to remove or repair the excess of neurons and connections that developed prenatally and in infancy,” Courchesne says. This theory follows from previously published research suggesting that some individuals with autism show improvements with age, he adds.

“Why some children with autism get noticeably better with age, while others do not, is a mystery that must be solved,” Courchesne says.

Autism Speaks Chief Science Officer Geri Dawson, Ph.D., adds, “This groundbreaking research would not be possible without donor support and family participation in resources such as AGRE and the Autism Tissue Program. We are so grateful to our community for making it possible to conduct research that will allow us to better understand the biological basis of autism.”


Southwest Missouri Walk Now For Autism Speaks

Posted on Mar 09 , 2012 in Blog

Southwest Missouri Walk Now For Autism Speaks 

Can you imagine hearing the words “your child has autism”? In a split second, life – as you know it – has changed. For a different family every 20 minutes, tomorrow will never be the same.

By participating in this event, you are helping to change the future for all who struggle with autism. By walking, you are getting us one step closer to finding what causes autism, how to prevent and treat it, and ultimately a cure so no family ever hears those words again. Until then, we walk to find answers and raise awareness about the devastating toll that autism has had on families like ours.

I need you to help make tomorrow be about dance lessons, school lunches and first words rather than therapy, doctor appointments and despair. Together, we will find the missing pieces.

Please help my team reach our goal!

Click Here to Donate


Why is autism so prevalent in highly developed countries?

Posted on Mar 09 , 2012 in Blog

A friend of mine recently said ““What really makes me crazy about autism is that I don’t remember any kid having it when I grew up nor do I see it when I travel and spend time in South America. Why then is it so prevalent in highly developed countries?”

Assuming they get questions like this often, I contacted our local Autism Speaks office in St. Louis and they supplied me with this long but detailed answer. Please read below.

This question leads the way in our research and is the reason for an ever growing need to fund that research.

In the last two decades, autism prevalence as report in the scientific literature has increased by more than 600%. In 2009, the latest estimate of autism prevalence in the United States, as report by the Centers for Disease Control was 1 in 110 children. Since then, a number of studies have sought to investigate the cause(s) of this dramatic increase in autism prevalence over time. Studies suggest that at least a portion of the increase in prevalence can be attributed to changes in diagnostic practices and increased awareness of autism over time, as well as other social factors such as advanced parental age. However, converging evidence also suggests that while these factors account for a portion of the increase, they cannot alone explain the dramatic rise in autism prevalence.

• The criteria for assessing autism has changed over the last 20 years resulting in a broadening of autism diagnoses and the identification of cases that would not have been diagnosed as such using older criteria. Looking at a population of children researchers reported that approximately 26% of the rise in autism could be directly attributed to changes in diagnostic criteria, specifically the shift from mental retardation diagnoses to autism diagnoses.

• Another aspect of the autism landscape that has changed over the past 20 years is an increase in the awareness of autism among the general public as well as healthcare professionals. Investigators found that children living in close proximity to another child that had been previously diagnosed with autism had a better chance of being diagnosed with autism themselves. The proposed explanation is information diffusion, or parents talking to and educating other parents about autism resulting in an increased likelihood of their children being diagnosed. It is estimated that 16% of the increase in autism prevalence over time was due to social influence and increased awareness.

• An additional social factor that has been implicated in contributing to the increase in autism prevalence is advanced parental age. A number of recent publications investigating the relationship between parental age and autism have demonstrated that older parents are at increased risk for having a child with autism. This is not surprising since increased parental age is associated with a slightly increased risk for other developmental disorders as well. Researchers reported that the increase in parental age over time can account for 11% of the increase in prevalence over the same time period.

Based on the abovementioned research, approximately 53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%). While this research is beginning to help us understand the increase in autism prevalence, half of the increase is still unexplained and not due to better diagnosis, greater awareness, and social factors alone. Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects currently supported by Autism Speaks.

The prevalence of autism worldwide is not known because screening and treatment for young children with developmental disabilities in developing countries is often inconsistent or altogether absent. From the information that is available it is clear that autism is a massive challenge facing families worldwide. The latest epidemiological estimates report that there are 1.7 million individuals in India with autism. There are 1.8 million reported cases of autism in China. It is likely that the number of children and families impacted by autism in Africa, South America and Asia numbers additional millions. Most of these families lack the guidance, support and understanding that would allow them to help their child reach his or her potential.

The increase in autism prevalence is real and the public health crisis is growing. More families are affected by autism today than ever before. While Autism Speaks has cast a wide net to explore the role of genetic and environmental factors in increasing the risk for autism, the research community requires additional funding support to increase the pace of discovery. Never before has the need for research into the causes of autism and effective treatments for autism been greater.



Posted on Mar 08 , 2012 in Blog



I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this………….

When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there has been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing to remember is that they haven’t taken you to a horrible place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you meet a whole new group of people you would have never met.

It’s just a different place. It’s slower paced than Italy, less flashy then Italy. But after you’ve been there for a while and you catch your breath, you look around…. And you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy….and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…. Because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.


Let the BLOGGING Begin

Posted on Feb 29 , 2012 in Blog

Heather thought it would be a good idea to start a blog and share throughout the year. So this is a start.  I’m sure we will figure out the finer points along the way.