Brain Banks for Autism Face Dearth

NY Times (June 25, 2012)-Clare True had autism and periodic seizures, but nothing prepared her family for Christmas Eve in 2006, when the 26-year-old went to bed after watching a movie and stopped breathing.

“I got home from a party, went to check on her just after midnight, and she was — she was gone,” said her mother, Jane True.

Paramedics tried to revive the young woman, then rushed her to the hospital, and somewhere in that firestorm of activity and grief, the Trues, Jane and her husband, Jim, considered donation. “I thought of it as a gift, her brain,” she said. “To my mind, the idea that scientists would be learning from her for years to come — how can you put a price on that?”

Clare True’s was one of 150 specimens stored in a Harvard brain bank that was ruined because of a freezer failure, doctors acknowledged this month. The loss, while a setback for scientists studying disorders like Huntington’s disease, Alzheimer’s and schizophrenia, especially mortified those working on autism, for it exposed what is emerging as the largest obstacle to progress: the shortage of high-quality autopsied brains from young people with a well-documented medical history.

The malfunction reduced by a third Harvard’s frozen autism collection, the world’s largest. A bank maintained by the University of Maryland has 52, and there are smaller collections elsewhere. Altogether there are precious few, given escalating research demands. The loss at the Harvard Brain Tissue Resource Center makes donations from parents like the Trues only more urgent.

“There’s just no question that human tissue is the gold standard for research, said Dr. Gerald D. Fischbach, a professor emeritus at Columbia and director of life sciences at the Simons Foundation, which promotes autism research. “You absolutely need it to answer some very basic questions.”

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'Why Now?' New Dad Jack Osbourne Faces MS

ABC News (June 18, 2012)-At only 26 and a new father, Jack Osbourne was diagnosed with multiple sclerosis earlier this spring.

The son of Ozzy and Sharon Osbourne told People Magazine he was diagnosed only two weeks after his daughter, Pearl Clementine, was born.

"I was just angry and frustrated and kept thinking, 'Why now?'" Osbourne told the magazine. "I've got a family and that's what's supposed to be the most important thing."

While Osbourne is younger than the average patient who is newly diagnosed with MS, it is not by much. The average age at which a patient is diagnosed is 37.

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord. The disease attacks the myelin sheath, a protective covering that surrounds nerve cells, and approximately 400,000 Americans have MS, according to the National MS Society. About 200 people are newly diagnosed each week.

While the disease is degenerative, symptoms, which affect the muscles, bowel function, vision, nerve and sexual function and personality, can vary and range greatly in severity.

Because of the typical early onset of the disease, Osbourne, and many other newly diagnosed MS patients, are at the threshold of many life decisions, including career, marriage and children.

"People have spent their entire life up until the point of diagnosis imagining their life in a certain way, they have to interpret how they're going to let go of that picture and how they see themselves, and fit that new information into the sense of who they are," said Rosalind Kalb, a clinical psychologist and director of the Professional Resource Center at the National Multiple Sclerosis Society. "It's a grieving process, and you can't move ahead on how you're going to live with MS until you spend a little time with the loss of a life without MS."

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Multiple Sclerosis Patients Have Lower Risk of Cancer

ScienceDaily (June 21, 2012) — Multiple sclerosis (MS) patients appear to have a lower cancer risk, according to a new study led by researchers at the University of British Columbia and Vancouver Coastal Health.

The study, published online in the journal Brain, is the first to investigate overall cancer risk in MS patients in North America.

"Because the immune system plays important roles in both cancer and MS, we wanted to know whether the risk of cancer is different for people with MS," says Elaine Kingwell, the study's lead author and a postdoctoral fellow in the UBC Faculty of Medicine and Brain Research Centre at UBC and VCH Research Institute. "Not only did MS patients have a lower overall cancer risk, the risk for colorectal cancer in particular was significantly lower."

The researchers compared the diagnoses of cancer in MS patients in British Columbia with those of the general population. While they found that MS patients have a lower risk in general for cancer -- and in particular for colorectal cancer -- they found that the risks for brain cancer and bladder cancer were slightly elevated (albeit not significantly). In patients with relapsing-onset MS, the risk for non-melanoma skin cancer was significantly greater.

Further studies will be needed to understand the reasons for this reduced overall cancer risk.

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Computer Analysis of EEG Patterns Suggests a Potential Diagnostic Test for Autism at Two Years Old

ScienceDaily (June 25, 2012) — Widely available EEG testing can distinguish children with autism from neurotypical children as early as age 2, finds a study from Boston Children's Hospital. The study is the largest, most rigorous study to date to investigate EEGs as a potential diagnostic tool for autism, and offers hope for an earlier, more definitive test.

Researchers Frank H. Duffy, MD, of the Department of Neurology, and Heidelise Als, PhD, of the Department of Psychiatry at Boston Children's Hospital, compared raw EEG data from 430 children with autism and 554 control subjects, ages 2 to 12, and found that those with autism had consistent EEG patterns indicating altered connectivity between brain regions -- generally, reduced connectivity as compared with controls.

While altered connectivity occurred throughout the brain in the children with autism, the left-hemisphere language areas stood out, showing reduced connectivity as compared with neurotypical children, consistent with neuroimaging research. Findings were published June 26 in the online open-access journal BMC Medicine.

Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications.

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Musical Brain Patterns Could Help Predict Epileptic Seizures

ScienceDaily (June 15, 2012) — The research led by Newcastle University's Dr Mark Cunningham and Professor Miles Whittington and supported by the Dr Hadwen Trust for Humane Research, indicates a novel electrical bio-marker in humans.

The brain produces electrical rhythms and using EEG -- electrodes on the scalp -- researchers were able to monitor the brain patterns in patients with epilepsy. Both in patients and in brain tissue samples the team were able to witness an abnormal brain wave noticeable due to its rapidly increasing frequency over time.

Comparing these to a musical 'glissando', an upwards glide from one pitch to another, the team found that this brain rhythm is unique to humans and they believe it could be related to epilepsy.

Dr Cunningham, senior lecturer in Neuronal Dynamics at Newcastle University said: "We were able to examine EEG collected from patients with drug resistant epilepsy who were continually monitored over a two week period. During that time we noticed patterns of electrical activity with rapidly increasing frequency, just like glissandi, emerging in the lead-up to an epileptic seizure."

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Chicago Woman Cured of Sickle Cell Disease

ScienceDaily (June 18, 2012) — Chicagoan Ieshea Thomas is the first Midwest patient to receive a successful stem cell transplant to cure her sickle cell disease without chemotherapy in preparation for the transplant.

University of Illinois Hospital & Health Sciences System physicians performed the procedure using medication to suppress her immune system and one small dose of total body radiation right before the transplant.

The transplant technique is relatively uncommon and is a much more tolerable treatment for patients with aggressive sickle cell disease who often have underlying organ disease and other complications, says Dr. Damiano Rondelli, professor of medicine at UIC, who performed Thomas's transplant.

The procedure initially allows a patient's own bone marrow to coexist with that of the donor. Since the patient's bone marrow is not completely destroyed by chemotherapy or radiation prior to transplant, part of the immune defense survives, lessening the risk of infection. The goal is for the transplanted stem cells to gradually take over the bone marrow's role to produce red blood cells -- normal, healthy ones.

Thomas, 33, had her first sickle cell crisis when she was just 8 months old. Her disease became progressively worse as an adult, particularly after the birth of her daughter. She has spent most of her adult life in and out of hospitals with severe pain and has relied on repeated red blood cell transfusions. Her sickle cell disease also caused bone damage requiring two hip replacements.

"I just want to be at home with my daughter every day and every night," said Thomas, who depends on family to help care for her daughter during her frequent hospitalizations.

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Autism Insurance Mandates Prompt Families To Move

Disability Scoop (June 18, 2012) -As an increasing number of states require health insurers to cover autism therapy, some families are leaving communities that don’t offer such coverage in search of greener pastures.

In Utah where no insurance mandate exists, families have crossed state lines for Colorado and fled as far away as New York and Missouri.

While moving was drastic for Brian and Anne Eliason who separated from their family and friends, the couple say relocating to the Denver area was worth it. In April alone the family’s health insurer spent $3,534 on speech, occupational and behavior therapy for their son, Isaac, money that they would have had to come up with on their own if they still lived in Utah.

Some advocates warn, however, that families should consider more than an autism insurance mandate before making a move. They caution that insurance requirements vary from state to state and there are other factors such as special education funding and Medicaid services that will make a difference for those with autism long-term, reports The Salt Lake Tribune.

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Competitors Form Partnership to Develop Autism Drugs

NY Times (June 19, 2012) Two of the front-runners in the race to develop drugs to treat mental retardation and autism are joining forces, hoping to save money and get to the market sooner.

A deal, expected to be announced on Tuesday, will pool the resources of Roche, the Swiss pharmaceutical giant, and Seaside Therapeutics, a private 30-employee company based in Cambridge, Mass.

“This deal will establish the biggest effort to date” in autism drugs, Luca Santarelli, head of neuroscience for Roche, said before the announcement. Financial terms are not being disclosed.

There is rising excitement that drugs might be able to relieve some of the behavioral problems associated with autism and in particular a cause of autism and mental retardation known as fragile X syndrome. About 100,000 Americans have fragile X syndrome.

Some parents of children being treated with new drugs in clinical trials have said they see positive changes in behavior.

Becky Zorovic of Sharon, Mass., said that when she used to take her son Anders, who has fragile X, to the dentist, she would have to lie in the chair and hold him on top of her as he screamed.

But after Anders starting taking Seaside’s drug, arbaclofen, in a clinical trial, she said, “He sat in the chair by himself and he opened his mouth and let the dentist polish his teeth and even scrape his teeth.” Anders has also has gone to birthday parties, which he once refused to do, she said.

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Freezer Damages Brain Samples Used to Study Autism

AP (June 11, 2012)-A freezer malfunctioned at a Harvard-affiliated hospital that oversees the world's largest collection of autistic brain samples, damaging a third of the scientifically precious specimens and casting doubt on whether they can be used in research.

The director of the Harvard Brain Tissue Resource Center said the loss was "devastating," particularly in light of the increasing demand for brain samples among scientists searching for the cause of autism and potential treatments.

"Over the last 10 years, the autism tissue program has been working very hard to get the autism community to understand the importance of brain donation," Dr. Francine Benes said. Now many of those samples have been compromised.

The freezer failed sometime late last month at the center, which is housed at McLean Hospital in the Boston suburb of Belmont. At least 54 samples earmarked for autism research were harmed. Many of them turned dark with decay.

However, an initial review indicates that the DNA in the samples is intact and can still be used for genetic research. It's unclear, however, whether the samples could be used for the full range of neuroscience needs.

Thirty-two of the brains had been cut in half, with one side placed in a formaldehyde solution and the other placed in the freezer. The samples in the solution remain available for all research projects, the hospital said.

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ATIA Webinar - Evaluating Web Accessibility: Developing a Program with Real AT Users

WEBINAR CODE: AT12-WEB18

WEBINAR TITLE: Evaluating Web Accessibility: Developing a Program with Real AT Users

PRESENTER(S): Janet Jendron, Program Coordinator, South Carolina Assistive Technology Program

DATE: Thursday, June 21, 2012

TIME: 3:30 p.m. – 5:00 p.m. Eastern Time

REGISTRATION FEE: $49

Link to Online Registration Form – Registration is now open!!

OVERVIEW: There is no substitute for the use of real, live people evaluating web pages for accessibility and usability! South Carolina has developed and implemented a program, training AT users (and some non-users) to evaluate state agency web sites. We’ll address: training methods, report formats/content, approaches for effective communication with state agency administrators/IT personnel, funding, identifying/training testers, testing tools, program adaptations made along the way, past and future strategies for maximizing the program’s impact, future plans and possibilities, and how components of the program could be replicated by other organizations and in other arenas.

STRAND: Policy - Policy and Implementation

AUDIENCE: Advocates, AT Specialists, Consumers/Individuals with Disabilities, Disability Services, Educators, Family Members, General Interest, Instructional Technologists, IT, Media Specialists, OTs, PTs, SLPs, Professional Development/Training, Rehab Therapists, Social Workers, Visual Impairment Specialists, Vocational Rehabilitation, Wed Designers

LEARNING OBJECTIVES: As a result of this webinar, participants will be able to:

• Describe strategies for training web users (with and without AT) to evaluate web pages for accessibility and usability.
• Describe effective ways to communicate accessibility challenges to state agency administrators and IT personnel.
• Describe elements of a meaningful accessibility report to web designers and state agency administrators.

SPEAKER BIOGRAPHIES: Janet Jendron, Web Accessibility Workgroup Chair, SC Assistive Technology Advisory Committee, administers a Web Testers Program, using people who use assistive technology (and some who don’t) to evaluate agency web pages for accessibility and usability. She facilitates reporting and presentation and consultation with agencies about evaluation results and possible accessibility solutions. She also manages the SC Assistive Technology Program's equipment reuse program, is the web administrator and does public relations for SCATP. She is experienced in non-profit administration in several arenas.

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Do you know someone with a spinal cord injury who needs a wheelchair ramp built for his or her home? If they cannot afford the cost of constructing a ramp, there are some limited funds available though the end of 2012 to help them do so. The funds are provided through a grant obtained by the Center for Spinal Cord Injury at Roper Hospital in Charleston.Up to $1,000 per ramp is available for lumber and supplies. Funds generally take three to four weeks to obtain, and recipients must be residents of South Carolina. Labor is not provided so individuals are recommended to talk with church and community groups about handling the ramp construction. In the Midlands area, two non-profit organizations build ramps with volunteer manpower: World Changers (Contact John Hert at 803-794-0524 or JHchgewd@msn.com) and EmmanuWheel (Contact Jeff Kirby at 803-730-8042 or james.j.kirby@usarmy.mil).For more information or to apply for ramp funding, contact Lori Wattay at 843-724-2837.

Assistive Technology Study

Catherine Graham is project manager for a USC study about adolescents and young adults and their use of assistive technology and other accommodations at school or work.

To participate you must:

Have Spina Bifida, Muscular Dystrophy or Fragile X Syndrome

Live in South Carolina

Be 15-24 years old

You will be paid $50 to complete the online survey.

For more information or to participate, please call Catherine Graham at 803-434-3189 or email at catherine.graham@uscmed.sc.edu.

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Measuring Family Satisfaction of BabyNet Services

Lesly S. Wilson PhD-Every year, a Family Satisfaction Survey (FSS) is mailed to all families with children enrolled in the BabyNet system. The Team for Early Childhood Solutions (TECS) manages this process for BabyNet. The FSS is a portion of a larger survey originally developed by the National Center for Special Education Accountability Monitoring (NCSEAM).
The BabyNet FSS has 34 questions and takes about 10-15 minutes to fill out. The intent of the survey is for BabyNet to understand more about how the program is impacting families and how they can better support families. In the 2010-2011 survey, 960 families participated and provided a snapshot of the types and location of children and families being impacted by BabyNet services. The following is some of the information gained from the survey:
Age at Referral: Most children were referred for early intervention services between birth-6 months (28%).
Number of Months Enrolled: Most children were enrolled in early intervention services for 6-12 months (32%), with 5% of children enrolled for 31-36 months.
Child’s Primary Diagnosis: Most children were identified as having Developmental Speech or Language Disorder/Delay (52%), with 4% of children identified as having Autism Spectrum Disorder as a primary diagnosis.

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