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What I did with your money

18 May

Now LBRB is successfully moved (with a few little bits of tidying needed her and there) I need to tell you what I did with the nearly $1000 so generously donated.

First and foremost of course I bought some new hosting. I think you’ll agree that the site feels much faster and slicker as a result of the move. Gone is the churning away and (hopefully) gone is the CPU throttling.

However, I did have some money left over so I decided that as you all had been so generous that the right thing to do was pay it forward. In that spirit I split the remaining money into three parts and donated thusly:

The Autism Science Foundation – A good deal of LBRB contributors and visitors are American so to donate to a science based autism foundation in the States seemed like a good idea. ASF do not place _any_ research monies into the blind alley of vaccines.

National Autistic Society is the UK’s leading autism charity, giving an actual voice to actual autistic people is vital and the NAS do this better than anyone else in my opinion.

Speur Ghlan are a small, recently incorporated charity based in the land of my fathers – Scotland. I know the founder well and am constantly impressed at her drive and enthusiasm for her subject matter.

The amounts involved were not huge obviously but I hope that I’ve managed to meet with your approval both in choice and reasons for choice.

Thank you once again for your generous donations to get LBRB a better home. I hope I can repay you with years more quality blogging from Sullivan and the odd bit of snark from me 😉

Prevalence of Autism Spectrum Disorders in a Total Population Sample

9 May

A long-awaited study of autism prevalence in Korea came out today in the American Journal of Psychiatry. Most of the information we have about autism prevalence comes from the US, the UK and Europe, so many were looking at this as the “Korean Study”. It is that, and very much more.

The title of the study is Prevalence of Autism Spectrum Disorders in a Total Population Sample. I expect the study will be gathering quite a lot of press as the results are quite remarkable. For one thing, the autism prevalence is estimated at 2.64%. That’s right, over double the current estimates in the United States and the U.K.. For another thing, most of the prevalence is for autistic students who were previously unidentified and unsupported.

Unfortunately, I was unable to obtain permission to review the article pre-embargo for discussion here on the Left Brain/Right Brain blog. Instead, I wrote about this for the Autism Science Foundation as Prevalence of Autism Spectrum Disorders in a Total Population Sample. There you will find a more thorough review of the paper, complete with questions and answers with team member Roy Richard Grinker of George Washington University. The study was led by Dr. Young Shin Kim of Yale, and includes an international team:

Young Shin Kim, M.D., Ph.D., Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D. , Eric Fombonne, M.D. Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D. ,Soo-Jeong Kim, M.D., Young-Key Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D., Roy Richard Grinker, Ph.D.

Again, the full post can be found at the Autism Science Foundation blog.

Your chance to win an iPad and beneift autism research

27 Apr

The iPad and autism: it’s a story that has picked up a lot of momentum in the media. One person who has told the story, and told it very well, is Shannon Rosa (of Squidalicious and The Thinking Person’s Guide to Autism). Her family won an iPad in a raffle and it has been “a force for good” for her son Leo ever since. Well, Leo has an iPad 2 (which I’m sure he shares with his sisters) and Shannon is passing on the “force for good” through a raffle of her own. She goes into details on her blog in a piece: Leo’s iPad Raffle.

Here are the basic details: $10 per ticket, purchased online for a chance to win a used iPad. This is the iPad used by the Leo in the video Apple produced to commemorate year one of the iPad:

Proceeds to benefit the Autism Science Foundation as a thank you for supporting Shannon’s travel expenses to attend IMFAR this year.

The iPad comes with a number of apps. A list of apps and the terms of the rafflecan be found on the raffle site.

Raffle ends at noon PST on Friday, April 29th, the winner will be announced at 1 PM PST, and will be selected using Random.org.

IAN Network Launches Critical Survey on Autism & Wandering

6 Apr

I received the following message from the Autism Science Foundation. The message discusses the survey to collect data on wandering by autistics. To participate, you need to register at the IAN Project website.

Today, the Interactive Autism Network (IAN) with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

* How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
* Which individuals with ASD are most at risk? At what age?
* What burden do efforts to thwart elopement behavior place on caregivers?
* What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

Autism Science Foundation announces Pre & Post Doctoral Training Fellowships

21 Mar

The Autism Science Foundation has announced their pre-doctoral and post doctoral fellowships for this year. The press release is quoted below.

This is an area of research funding I approve of–supporting new researchers. The more new, good people we can pull into the field, the better off autism research will be in the long term.

Pre & Post Doctoral Training Fellowships Announced

(March 21, 2011-New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced the recipients of its annual pre and post doctoral fellowships. In all, $220,000 in grants will be awarded to student/mentor teams conducting research in autism interventions, early diagnosis, biomarkers, and animal models. This funding level represents a 22% increase over last year’s training fellowship grants.

“We are thrilled to be increasing our funding in only our second year of operations, and to be supporting such high quality grants”, said Autism Science Foundation co-founder Karen London. “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

The following new projects have been selected for funding:

Post Doctoral Fellowships:

* Jill Locke/David Mandell: University of Pennsylvania
Implementing Evidence-Based Social Skills Interventions in Public School Settings
* Portia McCoy/Ben Philpot: University of North Carolina
Ube3a Requirements for Structural Plasticity of Synapses
* Haley Speed/Craig Powell: UT Southwestern University
Identifying Impairments in Synaptic Connectivity in Mouse Models of ASD
* Elena Tenenbaum/Stephen Sheinkopf: Women & Infants Hospital andBrown University
Attentional Distribution and Word Learning in Children with Autism

Pre-Doctoral Fellowships:

* Jessica Bradshaw/Robert Koegel: University of California at Santa Barbara
Prelinguistic Symptoms of Autism Spectrum Disorders in Infancy
* Christie Buchovecky/Monica Justice: Baylor College of Medicine
Identifying Genetic Modifiers of Rett Syndrome in the Mouse

Read more about these studies.

The Autism Science Foundation is a 501(c)3 public charity that provides funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Learn more at http://www.autismsciencefoundation.org

disclaimer–I have accepted support from ASF to attend IMFAR 2011./

Autism Science Foundation announces IMFAR stakeholder travel grant recipients

10 Mar

The Autism Science Foundation has announced the recipients of this year’s stakeholder travel grants for IMFAR.

The press release is below:

AUTISM SCIENCE FOUNDATION ANNOUNCES
IMFAR STAKEHOLDER TRAVEL GRANT RECIPIENTS

IMFAR Stakeholder Travel Awards will Support Parents, Individuals with Autism, Teachers & Students

(March 10, 2011—New York, NY)–The Autism Science Foundation, a not for profit organization dedicated to supporting and funding autism research, today announced the recipients of its IMFAR Stakeholder Travel grants. ASF will make 11 awards of up to $1000 to be used to cover expenses related to attending the International Meeting for Autism Research in San Diego in May 2011. After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

This year’s recipients are:

Geraldine Bliss–Parent
Matthew Carey–Parent
Shannon Des Roches Rosa–Parent
Mark Fornefeld–Self Identified Individual with Autism
Abby Hare–Graduate Student
Erin Lopes–Parent
Molly McGrath–Self Identified Individual with Autism/MIT Media Lab
Brianna Miller–Special Ed Teacher, Newark Public Schools
Sharman Ober-Reynolds–Parent/Senior Research Coordinator, SARRC
Megan O’Boyle –Parent
Max Rolison–Undergraduate Student

IMFAR is an annual scientific meeting, convened each spring, to promote exchange and dissemination of the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way”, said Alison Singer, President of the Autism Science Foundation. “We are confident that the award recipients will all do a great job of bringing critical new research information to their communities, improving the speed with which the latest data are shared with the broader autism community.”

The Autism Science Foundation is a 501(c)(3) public charity launched in 2009 whose mission is to support autism research by providing funding to those who conduct, facilitate, publicize and disseminate autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The International Society for Autism Research (INSAR) is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. INSAR was created in 2001. The society runs the annual scientific meeting – the International Meeting for Autism Research (IMFAR) and publishes the research journal “Autism Research”.

Contact Info:

Julie Martin
Events and Media Manager
Autism Science Foundation
jmartin@autismsciencefoundation.org
419 Lafayette Street, 2nd floor
New York, NY 10003

Vaccines and Autism: A Story of Medicine, Science and Fear

2 Feb

Tomorrow on National Public Radio (US) The Diane Rehm Show will host a discussion of autism and vaccines: Vaccines and Autism: A Story of Medicine, Science and Fear

In 1998 a research paper was published that linked the childhood measles, mumps and rubella vaccine to the onset of autism, a life long developmental disorder. Follow up studies could not replicate the findings casting doubt on its conclusions, and earlier this year it was proven that this original study was, in fact, fraudulent. But the damage was done. Childhood vaccination rates dropped resulting in outbreaks of measles and whooping cough. Funds that would have gone to new research into the causes of autism were diverted, and surveys indicate that about one in five Americans continues to believe that a childhood vaccine can trigger autism. A story of fraudulent medical research and its consequences.

Guests will be:

Seth Mnookin: Author of “Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top” and “Hard News: The Scandals at the New York Times and Their Meaning for American Media.” He is a contributing editor at “Vanity Fair” and a former senior writer for “Newsweek.”

Dr. Roberta DeBiasi: pediatric infectious diseases physician at Children’s National Medical Center

Alison Tepper Singer: Founder and President of the Autism Science Foundation, formerly Executive Vice President of Autism Speaks, served on the federal Interagency Autism Coordinating Committee (IACC.)

Alison Singer from Autism Science Foundation on CNN

7 Jan

Here’s the video:

http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=bestoftv/2011/01/07/exp.am.intv.chetry.autism.cnn

If anyone finds the Transcript from this video please post the address in the comments 🙂

Autism Science Foundation’s Recipe4Hope campaign

9 Dec

The Autism Science Foundation is a charity which focuses on funding autism research. They have a very clear mission statement:

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. The foundation also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Read about our achievements in 2010 on our Ingredients page.

Our organization adheres to rigorous scientific standards and values. We believe that outstanding research is the greatest gift we can offer our families. Every research dollar needs to count toward that goal, and we make sure that it does.

The Autism Science Foundation is a nonprofit corporation organized for charitable and educational purposes and exempt from taxation under Section 501(c)(3) of the IRS code. All donations are tax deductable to the full extent allowed by law.

Learn more about our foundation at http://www.autismsciencefoundation.org.

One focus of the ASF has been to fund graduate level researchers. I find this an especially good goal in that in addition to promoting research, this brings more people into the autism research community.

The Recipe4Hope campaign will raise money for autism research. According to the ASF: “Every dollar donated by December 31 through this special year-end campaign will go directly to autism research.”

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Autism Science Foundation anounces pre and post doctoral training awards in autism research

7 Sep

The Autism Science Foundation has announced a new round of fellowships for grad students, medical students and post-doctoral fellows who will pursue autism research.

(September 7, 2010–New York, NY) The Autism Science Foundation invites applications for its Pre and Post Doctoral Training Awards from graduate students, medical students and post-doctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders.

The proposed training must be scientifically linked to autism. ASF will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, studies employing model organisms and systems, and studies of treatment and service delivery.

Applicants for the pre-doctoral awards must be students enrolled in a program in the United States leading to a research doctorate such as a Ph.D. or Sc.D., a combined degree such as an M.D./Ph.D., in an academic department at an accredited university or health/medical institution, or an M.D. at an accredited university medical school. Applicants for the post-doctoral awards must have completed their doctoral degree and have been accepted as a post doctoral fellow in good standing in a program in the United States. The selected awardee must spend 80% of his/her professional time engaged exclusively in autism research activities stipulated in the application for the duration of the award, and cannot simultaneously hold another named fellowship award during the support period.

Each applicant must apply with a mentor, who must hold a tenured or tenure-track faculty appointment (or equivalent) at an accredited institution of higher education or health/medical/research institution in the United States, and must be an established and active investigator in some aspect of autism research.
Each mentor may sponsor one pre-doctoral candidate and one post-doctoral candidate per year.

Learn more at www.autismsciencefoundation.org/ApplyForaGrant.html

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