ASAN Unveils Toolkit for Ending Organ Transplant Discrimination

•March 14, 2014 • Leave a Comment

ASAN Unveils Toolkit on Ending Organ Transplant Discrimination

A Toolkit for Disability Advocates

March 14, 2013 ASAN — ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.

Wheelcgair

Wheelchair.
Image by Etac Sverige AB at Wikimedia Commons (CC-BY-SA).


As Autistic Self Advocacy Network (ASAN) found in their 2013 report External Link, when people with intellectual and developmental disabilities need an organ transplant to treat a life-threatening condition, they frequently face barriers to receiving this lifesaving care. Doctors and transplant centers may refuse to approve organ transplants for people with disabilities who might need help in order to follow complicated post-transplant treatment plans. Others may refuse to approve transplants for people with disabilities based on the belief that, when deciding who should receive an organ transplant, people without disabilities should have a higher priority.

ASAN’s toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.

  • The “Know Your Rights” guide External Link provides people with disabilities and their families with information on existing laws and policies that may protect them from discrimination, and information on who to contact if they experience discrimination.
  • The Guide for Advocates External Link provides information on ways that advocates can help fight organ transplantation discrimination on a wider basis, such as through legislative advocacy and outreach to the medical community.
  • The Model Legislation External Link on organ transplant discrimination provides an example of effective anti-discrimination legislation that advocates can propose to their state legislatures.
  • The Guide for Clinicians External Link and Checklist of available supports and services External Link gives doctors and other health professionals concrete advice on how to serve people with disabilities who may need an organ transplant.

ASAN’s toolkit on organ transplantation is the first of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation.

We hope that you find our toolkit useful and distribute it widely. Please send any concerns, feedback, or comments on how you plan to use the toolkit to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org.


Go to ASAN source External Link.

Vitamin D, serotonin synthesis and autism

•March 10, 2014 • Leave a Comment

Vitamin D, serotonin synthesis and autism

Nutritional Therapy

March 10, 2014  Melinda Krigel of CHORI —

President Barack Obama
Vitamin D capsule.
Image by Demonsub at flickr


STORY HIGHLIGHTS

• Vitamin D supplement may improve social behavior in Autistics by increasing the neurotransmitters serotonin, oxytocin, and vasopressin.

A new study by Rhonda Patrick, PhD and Bruce Ames, PhD of Children’s Hospital Oakland Research Institute (CHORI) demonstrates the impact that Vitamin D may have on social behavior associated with Autism Spectrum Disorder (ASD). Dr. Patrick and Dr. Ames show that serotonin, oxytocin, and vasopressin, three brain hormones that affect social behavior, are all activated by vitamin D hormone. Autism, which is characterized by abnormal social behavior, has previously been linked to low levels of serotonin in the brain and to low vitamin D levels, but no mechanism has linked the two until now.

In this study, Dr. Patrick and Dr. Ames show that vitamin D hormone activates the gene that makes the enzyme tryptophan hydroxylase 2 (TPH2), that converts the essential amino acid tryptophan, to serotonin in the brain. This suggests that adequate levels of vitamin D may be required to produce serotonin in the brain where it shapes the structure and wiring of the brain, acts as a neurotransmitter, and affects social behavior. They also found evidence that the gene that makes the enzyme tryptophan hydroxylase 1 (TPH1) is inhibited by vitamin D hormone, which subsequently halts the production of serotonin in the gut and other tissues, where when found in excess it promotes inflammation.

This mechanism explains many of the known, but previously not understood, facts about autism including: 1) the “serotonin anomaly” low levels of serotonin in the brain and high levels in the blood of autistic children; 2) the preponderance of male over female autistic children: estrogen, a similar steroid hormone, can also boost the brain levels of serotonin in girls; 3) the presence of autoimmune antibodies to the fetal brain in the mothers of autistic children: vitamin D regulates the production of regulatory T-cells via repression of TPH1. The Patrick/Ames mechanism is relevant to the prevention of autism, and likely its treatment.

The current guidelines for adequate vitamin D levels are concentrations above 30 ng/ml. Most Americans’ vitamin D is made in the skin from exposure to UVB radiation; however, melanin pigment and sunscreen inhibit this action. This is an important cause of the well-known widespread vitamin D deficiency among dark-pigmented Americans, particularly those living in Northern latitudes. The most recent National Health and Examination survey reports that greater than 70% of U.S. population does not meet this requirement and that adequate vitamin D levels have plummeted over the last couple of decades. This precipitous drop in adequate levels of vitamin D in the US is concurrent with the rise in autism rates.

The study suggests dietary intervention with vitamin D, tryptophan and omega 3 fatty acids would boost brain serotonin concentrations and help prevent and possibly ameliorate some of the symptoms associated with ASD without side effects. There is little vitamin D present in food and fortification is still inadequate as is the amount in most multivitamin and prenatal supplements. Vitamin D supplements are inexpensive and offer a simple solution to raise vitamin D levels to an adequate status. In addition, vitamin D levels should be routinely measured in everyone and should become a standard procedure in prenatal care.


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News: Confirmed — Autistic kids have poorer sleep quality

•October 5, 2013 • Leave a Comment

News: Confirmed — Autistic kids have poorer sleep quality

 News Health Research

BMJ Group Media Centre News Release | London, UK | September 30, 2013External Link — Autistic children sleep duration is shorter and they are more prone to frequent waking at night. Poor quality sleep may affect daytime learning and behaviour, say the authors.

sleeping child
Sleeping child. (CC BY-NC-ND 2.0) External Link by bitcelt External Link
The research, “Sleep patterns in children with autistic spectrum disorders: a prospective cohort study External Link,” is published in the Archives of Disease in Childhood.

The study’s authors are Joanna S Humphreys, Paul Gringras, Peter S Blair, Nicola Scott, John Henderson, Peter J Fleming, Alan M Emond.

Children with autistic spectrum disorders have poorer sleep quality than their peers right up to their teens, reveals research published online in the Archives of Disease in Childhood.

Total sleep duration is shorter and punctuated by more frequent waking at night, the research shows. Poor quality sleep may affect daytime learning and behaviour, say the authors.

Disrupted sleep patterns have been linked to autism before, but the quality of the evidence accumulated to date has often been compromised by small sample size, lack of agreed definitions, and poor comparability of study participants.

The authors of this study instead base their findings on long term data derived from the Avon Longitudinal Study of Parents and Children (ALSPAC), which has been tracking the health and development of more than 14,000 children born in 1991-2 in South West England.

All the parents were quizzed about their children’s sleeping patterns when their kids were 6, 18, 30, 42, 69, 81, 115 and 140 months old, including when their children routinely went to bed and woke up on week days, and how much time they spent sleeping during the daytime.

The researchers also took account of other key information, including the results of validated questionnaires on social and communication skills (SCDC) and intelligence (WISC-III) when the children were 7 years old.

Eighty six of the children had been diagnosed with autistic spectrum disorders by the time they were 11 years old. Thirty had classic autism; 15 had atypical autism; and 23 had Asperger’s syndrome.

The final analysis was based on 39 children with autistic spectrum disorders and 7043 typical children for whom complete data across all time points were available.

This showed that before the age of 30 months, there was no major difference in sleeping patterns between the two groups of children. But from 30 months onwards, children with autistic spectrum disorders tended to sleep less in total, with the greatest discrepancy (43 minutes) persisting up to 140 months of age.

Although the gap in total sleep narrowed after this point, autistic children still slept around 20 fewer minutes each day than their typical peers by the time they reached their teens.

These differences remained even after taking account of influential factors, such as prematurity, low birthweight, maternal education, and social class.

These differences were wholly due to the length of night-time sleep, which was shortened by frequent bouts of wakefulness.

From the age of 30 months onwards, children with autistic spectrum disorders were significantly more likely to wake three or more times a night than their typical peers, a difference that became even more noticeable the older the children became.

By the time the children were 81 months old, more than one in 10 of those with autistic spectrum disorders were waking three or more times a night compared with just 0.5% of their peers.

An increasing body of data also suggests that production of the sleep hormone melatonin may be impaired in some children with autistic spectrum disorders, which may explain disturbed sleep patterns, suggest the authors.

But it’s unclear just what impact this shortened sleep pattern may have, they acknowledge. But they point out that other researchers have suggested that sleep loss may have impact on neuronal development.

“If this hypothesis of cumulative sleep reduction resulting in neuronal loss is confirmed, then clinically [children with autism] might gain from even a small consistent increase in total sleep time,” they write.

News: Viral infection during pregnancy disrupts neural development in offspring

•September 29, 2013 • Leave a Comment

News: Viral infection during pregnancy disrupts neural development in offspring

 News Health Research

(UC Davis School of Medicine News Release | SACRAMENTO, Calif. | September 19, 2013External Link) Activating a mother’s immune system during her pregnancy disrupts the development of neural cells in the brain of her offspring and damages the cells’ ability to transmit signals and communicate with one another, researchers with the UC Davis Center for Neuroscience and Department of Neurology have found. They said the finding suggests how maternal viral infection might increase the risk of having a child with autism spectrum disorder or schizophrenia.

McAllister
Kimberly McAllister © UC Regents
The research, “MHCI Requires MEF2 Transcription Factors to Negatively Regulate Synapse Density during Development and in Disease,” is published in the Journal of Neuroscience.

The study’s senior author is Kimberley McAllister, professor in the Center for Neuroscience with appointments in the departments of Neurology and Neurobiology, Physiology and Behavior, and a researcher with the UC Davis MIND Institute.

“This is the first evidence that neurons in the developing brain of newborn offspring are altered by maternal immune activation,” McAllister said. “Until now, very little has been known about how maternal immune activation leads to autism spectrum disorder and schizophrenia-like pathophysiology and behaviors in the offspring.”

The study was conducted in mice and rats and compared the brains of the offspring of rodents whose immune systems had been activated and those of animals whose immune systems had not been activated. The pups of animals that were exposed to viral infection had much higher brain levels of immune molecules known as the major histocompatibility complex I (MHCI) molecules.

“This is the first evidence that MHCI levels on the surface of young cortical neurons in offspring are altered by maternal immune activation,” McAllister said.

The researchers found that the high MHCI levels impaired the ability of the neurons from the newborn mice’s brains to form synapses, the tiny gaps separating brain cells through which signals are transmitted. Earlier research has suggested that ASD and schizophrenia may be caused by changes in the development of connections in the brain, especially the cerebral cortex.

The researchers experimentally reduced MHCI to normal levels in neurons from offspring following maternal immune activation.

“Remarkably, synapse density returned to normal levels in those neurons,” McAllister said.

“These results indicate that maternal immune activation does indeed alter connectivity during prenatal development, causing a profound deficit in the ability of cortical neurons to form synapses that is caused by changes in levels of MHCI on the neurons,” she said.

MHCI did not work alone to limit the development of synapses. In a series of experiments, the UC Davis researchers determined that MHCI interacted with calcineurin and myocyte enhancer factor-2 (Mef2), a protein that is a critical determinant of neuronal specialization.

MHCI, calcineurin and Mef2 form a biological signaling pathway that had not been previously identified. McAllister’s team showed that in the offspring of the maternal immune activation mothers, this novel signaling pathway was much more active than it was in the offspring of non-MIA animals.

“This finding provides a potential mechanism linking maternal immune activation to disease-linked behaviors,” McAllister said.

It also is a mechanism that may help McAllister and other scientists to develop diagnostic tests and eventually therapies to improve the lives of individuals with these neurodevelopmental disorders.

Other study authors are Bradford M. Elmer, Myka L. Estes and Stephanie L. Barrow, all of UC Davis.

The research was supported the National Institute of Neurological Disorders and Stroke (R01 NS060125), the UC Davis Research Investments in Science and Engineering Program, Dennis Weatherstone Predoctoral Fellowships (No. 6339 and No. 7825) and the National Center for Advancing Translational Sciences (UL1 TR 000002 and linked award TL1 TR 000133).

The UC Davis School of Medicine is among the nation’s leading medical schools, recognized for its research and primary-care programs. The school offers fully accredited master’s degree programs in public health and in informatics, and its combined M.D.-Ph.D. program is training the next generation of physician-scientists to conduct high-impact research and translate discoveries into better clinical care. Along with being a recognized leader in medical research, the school is committed to serving underserved communities and advancing rural health. For more information, visit UC Davis School of Medicine at medschool.ucdavis.edu.

News: Obamacare and the I/DD Community

•September 12, 2013 • Leave a Comment

News: Obamacare and the I/DD Community

 News Health Care

The Autistic Self Advocacy Network has written a policy brief on the impact that Obamacare will have on our community. The brief titled “The Affordable Care Act and the I/DD Community, An Overview of the Law and Advocacy Priorities Going Forward” was written by Ari Ne’eman. The 17 page report discusses the impact of the Affordable Care Act on the disability community and needs not yet met.

Get your pdf copy hereExternal Link or from our library here.

Source: Blank dot Blank dot Blank dot ASAN Policy Brief: What Impact will the Affordable Care Act have on People with I/DD?External Link
 

News- Is this the meaning of ‘Goodwill’?

•August 24, 2013 • Leave a Comment

News: Is this the meaning of ‘Goodwill’?

 News

 ASAN Petition  Petition by The Autistic Self Advocacy NetworkExternal Link

From Change.org — Goodwill Industries pays thousands of workers with disabilities less than minimum wage by exploiting a provision in the Fair Labor Standards Act left over from the 1930s. Sec 14 (c) allows corporations to pay people with disabilities a subminimum wage. According to Labor Department records, Goodwill pays some of its disabled workers as low as 22, 38 and 41 cents per hour. This is wrong: disabled workers at Goodwill deserve to be paid a living wage.

It’s not well known that Goodwill is a multibillion-dollar company whose executives make six-figure salaries. They don’t need to pay disabled people subminimum wages when salaries for the CEOs Goodwill franchises across America total more than $30 million.

For more infor or to sign this petition goto

Change.org: Goodwill Industries International: Pay Disabled Workers a Real WageExternal Link

News: Air Pollution Exposure May Cause Autism

•June 20, 2013 • Leave a Comment

News: Air Pollution Exposure May Cause Autism

 News

Boston, MA, June 18, 2013 — Women in the U.S. exposed to high levels of air pollution while pregnant were up to twice as likely to have a child with autism as women who lived in areas with low pollution, according to a new study from Harvard School of Public Health (HSPH). It is the first large national study to examine links between autism and air pollution across the U.S.

“Our findings raise concerns since, depending on the pollutant, 20% to 60% of the women in our study lived in areas where risk of autism was elevated,” said lead author Andrea Roberts, research associate in the HSPH Department of Social and Behavioral Sciences.

The study appeared online June 18, 2013 in Environmental Health Perspectives.

Exposure to diesel particulates, lead, manganese, mercury, methylene chloride and other pollutants are known to affect brain function and to affect the developing baby. Two previous studies found associations between exposure to air pollution during pregnancy and autism in children, but those studies looked at data in just three locations in the U.S.

The researchers examined data from Nurses’ Health Study II, a long-term study based at Brigham and Women’s Hospital involving 116,430 nurses that began in 1989. Among that group, the authors studied 325 women who had a child with autism and 22,000 women who had a child without the disorder. They looked at associations between autism and levels of pollutants at the time and place of birth. They used air pollution data from the U.S. Environmental Protection Agency to estimate women’s exposure to pollutants while pregnant. They also adjusted for the influence of factors such as income, education, and smoking during pregnancy.

The results showed that women who lived in the 20% of locations with the highest levels of diesel particulates or mercury in the air were twice as likely to have a child with autism as those who lived in the 20% of areas with the lowest levels.

Other types of air pollution—lead, manganese, methylene chloride, and combined metal exposure—were associated with higher autism risk as well. Women who lived in the 20% of locations with the highest levels of these pollutants were about 50% more likely to have a child with autism than those who lived in the 20% of areas with the lowest concentrations.

Most pollutants were associated with autism more strongly in boys than girls. However, since there were few girls with autism in the study, the authors said this finding should be examined further.

Senior author Marc Weisskopf, associate professor of environmental and occupational epidemiology at HSPH, said, “Our results suggest that new studies should begin the process of measuring metals and other pollutants in the blood of pregnant women or newborn children to provide stronger evidence that specific pollutants increase risk of autism. A better understanding of this can help to develop interventions to reduce pregnant women’s exposure to these pollutants.”

Other HSPH authors included Alberto Ascherio, professor of epidemiology and nutrition; Kristen Lyall, visiting scientist in the Department of Nutrition; Jaime Hart, instructor in the Department of Environmental Health; Francine Laden, Mark Winkler and Catherine Winkler Associate Professor of Epidemiology in the Department of Epidemiology; Allan Just, research fellow in the Department of Environmental Health; and Jennifer Bobb, research fellow in the Department of Biostatistics.

Support for the study came from DOD W81XWH-08-1-0499, USAMRMC A-14917, NIH T32MH073124-08, P60AR047782 and R01ES017017-04. The Nurses’ Health Study II is funded in part by NIH CA50385.

For more information: Todd Datz, 617.432.8413, tdatz @ hsph.harvard.edu

Reference:  Roberts, Andrea L.; Lyall, Kristen; Hart, Jaime E.; Laden, Francine; Just, Allan C.; Bobb, Jennifer F.; Koenen, Karestan C.; Ascherio, Alberto; and Weisskopf, Marc G. | Perinatal Air Pollutant Exposures and Autism Spectrum Disorder in the Children of Nurses’ Health Study II Participants | Environmental Health Perspectives | online June 18, 2013 @ http://ehp.niehs.nih.gov/1206187/External Link.


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Links: Blank dot Blank dot Blank dot Environmental Health Perspectives: Press ReleaseExternal Link
Environmental Health Perspectives: Journal ArticleExternal Link

 
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