PBS: Portrait of a dyslexic artist, who transforms neurons into ‘butterflies’

After completing a fellowship at the National Institutes of Health, artist Rebecca Kamen has transformed her discussions with neuroscientists into abstract sculptures, such as this close-up view of “Butterflies of the Soul.” (Image courtesy of Rebecca Kamen.)

Rebecca Kamen’s sculptures appear as delicate as the brain itself. Thin, green branches stretch from a colorful mass One of Kamen's influences is the writing of Santiago Ramon y Cajal, who is called the "father of modern neuroscience." Cajal once said: “Like the entomologist in search of colorful butterflies, my attention has chased in the gardens of the grey matter cells with delicate and elegant shapes, the mysterious butterflies of the soul, whose beating of wings may one day reveal to us the secrets of the mind."  of vein-like filaments. The branches, made from pieces of translucent mylar and stained with diluted acrylic paint, are so delicate that they sway slightly when mounted to the wall. Perched on various parts of the sculpture are mylar butterflies, whose wings also move, as if fluttering.

One of Kamen’s artistic influences is the writing of Santiago Ramon y Cajal, who is called the “father of modern neuroscience.”

The work, called “Butterflies of the Soul” was inspired by neuroscientist Santiago Ramon y Cajal, who won the 1906 Nobel Prize, for his groundbreaking work on the human nervous system. Kamen’s sculpture is a nod to his work and the development of modern neuroscience. Cajal’s observation of the cells under the microscope radically changed how scientists study the brain and its functions, Kamen said. And the butterflies in her sculpture represent Cajal’s drawings of Purkinje cells, which are found in the cerebellar cortex at the base of the brain.

visit story on PBS

The Affordable Care Act (ACA) and Autism

National Autism Network – Synopsis of Law: 

· Federal Health Care Reform and Autism Insurance

  • Prohibits discrimination in benefits against people with autism by including behavioral health treatments as part of the essential benefits package
  • Provides grants for mental and behavioral health education and training
  • Beginning 2014, health plans will include essential benefits package. The following is a list of items and services deemed essential:

-Ambulatory patient services
-Emergency services
-Maternity and newborn care
-Mental health and substance use disorder services, including behavioral health treatment
-Prescription drugs
-Rehabilitative and habilitative services and devices
-Laboratory services
-Preventive and wellness services and chronic disease management
-Pediatric services, including oral and vision care

  • Requires the following health plans to cover the list of essential benefits, including behavioral health treatment beginning in 2014:

-Plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage

-Plans offered in the individual and small group markets outside the health insurance exchange

  • Does NOT require the following health insurance plans to provide essentials benefits package:

-Existing coverage
-Plans offered in the large group market outside exchanges
-Self-insured or ERISA plans

  • Law will help end neglectful practices such as:

-Pre-existing condition exclusions
-Excessive waiting periods for coverage
-Rescissions of coverage
-Limits ability of insurers to place annual and lifetime dollar caps on coverage

Registration for health plans under the Affordable Care Act begins October 1, 2013 and must be completed by March 1, 2014 to avoid a penalty. To learn about how the Affordable Care Act with effect autism insurance coverage in your state please visit ourState Insurance Reform Initiatives Map. Each state’s information will detail whether or not ABA will be covered in that state under the Affordable Care Act and highlights information on past autism insurance reform, if applicable.

Visit the site or visit the Affordable Care Act Fact Sheets

NYT: How to Think About the Risk of Autism

A STUDY published last week found that the brains of autistic children show abnormalities that are likely to have arisen before birth, which is consistent with a large body of previous evidence. Yet most media coverage focuses on vaccines, which do not cause autism and are given after birth. How can we help people separate real risks from false rumors?

Over the last few years, we’ve seen an explosion of studies linking autism to a wide variety of genetic and environmental factors. Putting these studies in perspective is an enormous challenge. In a database search of more than 34,000 scientific publications mentioning autism since its first description in 1943, over half have come since 2008. Continue reading NYT: How to Think About the Risk of Autism

NPR: Brain Changes Suggest Autism Starts In The Womb


Children who have autism usually don’t get diagnosed before the age of four. But a study published in the current issue of The New England Journal of Medicine suggests the disorder starts well before birth. The findings should bolster efforts to understand how genes control brain development and contribute to autism. NPR’s Jon Hamilton reports.

JON HAMILTON, BYLINE: About halfway through pregnancy, the brain of a fetus starts to get organized. Eric Courchesne, an autism researcher at UC San Diego, says this process is especially important in the cortex, a thin sheet of cells that’s critical for learning and memory.

ERIC COURCHESNE: This sheet is like a layer cake. There are six layers, one on top of the other. In each layer, there are different types of brain cells.

HAMILTON: Courchesne suspected that these layers might be altered in the brains of children with autism. So he and a team of researchers studied samples of cortex from 22 children who had died. The cortex came from areas known to be associated with the symptoms of autism. Courchesne says some of the samples came from typical children, others from children with the disorder.

COURCHESNE: In autistic cortex, there are patches about five millimeters to 10 millimeters in diameter in which specific cells in specific layers seem to be missing.

HAMILTON: In these patches, Courchesne says, instead of distinct layers, there are disorganized collections of brain cells without clear boundaries. He says this almost certainly means that something went wrong very early in brain development. Continue reading NPR: Brain Changes Suggest Autism Starts In The Womb

NPR: Blood Test Provides More Accurate Prenatal Testing For Down Syndrome

A new blood test offers pregnant women a safe and much more accurate way to screen for Down syndrome.

A study that evaluated the test in 1,914 pregnancies found that the test, which checks DNA, produces far fewer false alarms than the current screening techniques.

“It’s very good news for pregnant women,” says Diana Bianchi, a pediatric geneticist at Tufts Medical Center who led the study. “It’s very important because it means a significant proportion of women are not being made anxious by being told they have an abnormal test result.”

Bianchi and others stressed that the results of the screening test would still need to be confirmed by follow-up diagnostic tests — either amniocentesis or chorionic villus sampling, which can cause miscarriages. But the new blood test would send fewer women for that risky testing.

“That’s what we’re really concerned with at the end of the day,” Bianchi says. “That there’s an unintended miscarriage resulting from a procedure that didn’t need to be performed in the first place.”

Doctors recommend that all pregnant women get screened for Down syndrome and other trisomies, which are conditions caused by too many chromosomes. But the tests, which rely on measuring chemicals in the mother’s blood and doing an ultrasound of the back of the neck of the developing fetus, can raise flags when none are warranted in a small but significant number of cases.

read more


NPR: “Florida Bill Would Allow Medical Marijuana For Child Seizures”

Florida may soon become the latest state to allow doctors to prescribe marijuana. Advocates there are gathering signatures to put a medical marijuana referendum on the fall ballot.

But Florida’s Legislature may act sooner to allow residents access to a particular type of marijuana. Advocates say the strain called Charlotte’s Web offers hope to children with severe seizure disorders.

Paige Figi is a Colorado mom whose young daughter Charlotte suffers from Dravet syndrome. It’s a debilitating genetic disease that left the little girl unable to walk, talk or eat. Figi says an oil extracted from a particular strain of marijuana has helped save her daughter’s life.

“Charlotte is doing great,” says Figi, who was in Tallahassee, Fla., to testify at a legislative hearing. “She’s two years in to treatment. I would have brought her here, but she can’t leave Colorado.”

That’s because the marijuana extract her daughter depends on can’t legally be transported across state lines.

It’s from a variety of marijuana with very little tetrahydrocannabinol, or THC, the primary component that produces the high. Instead, the strain has very high amounts of another compound — cannabidiol, or CBD.

A few years ago, Figi told legislators, her daughter was having 300 seizures a week. After trying every drug and therapy she and her husband could think of, they started Charlotte on a marijuana extract that contained high amounts of CBD. She takes just a few milligrams of the oil each day in her food.

The results have been dramatic, Figi says. “She’s 99 percent — almost 100 percent — seizure-free,” she adds. “She has about one or two seizures a month now, [down] from 1,200.” Continue reading NPR: “Florida Bill Would Allow Medical Marijuana For Child Seizures”