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Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

1 Mar

Last June Autism Speaks suddenly announced that their president, Mark Roithmayr, was leaving and being replaced by Liz Feld. (Mr. Roithmayr is now Chief Development Officer at the Leukemia & Lymphoma Society) There was little information about why Mr. Roithmayr left. The suddenness and the lack of information given out for the departure of an executive pointed to there being much more going on behind the scenes. Things going on which Autism Speaks would prefer did not become public.

In reading up on the group Focus Autism, I found a past webpage of emails from the founder, Barry Segal. One of those is copied below:

Barry Segal’s email to Bob Wright June 21, 2012

Bob,

Good work on Mark. On June 1st, I sent an email to you as well as Peter Bell that stated, “I feel Mark Roithmayr is not an asset to Autism Speaks.” In three weeks he was gone. You acted faster than Warren Buffet. When I wrote him that his top three men at JM knew nothing about roofing, it took him 90 days to replace them.

Here’s the problem. The gist of it is that the government was not going to do the necessary environmental and vaccine research due to political restrictions of public money, but that did not mean that private sector organizations, like Autism Speaks, had to follow those restrictions, per Kevin Barry.

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

Barry

It appears clear to me from this email that Mr. Roithmayr was pushed out. If we take the email above at face value, Barry Segal (a large donor to Autism Speaks) wrote to Bob Wright (Founder of Autism Speaks) and Peter Bell (executive vice president for Autism Speaks), pushing for Mr. Roitmayr’s ouster. Mr. Segal has elsewhere indicated that both Bob Wright and Peter Bell want more work done on vaccines and autism.

Given the next two paragraphs of the email, it appears that Mr. Segal’s complaint about Mr. Roithmayr was, indeed, his stance on vaccines:

It doesn’t matter whether you have Liz Feld, Donald Trump or Alex Rodriguez on the board. Unless Bernie relents and lets Autism Speaks go after the vaccine involvement, nothing will be gained.

I read this to say that while pushing Mr. Roithmayr out was a step forward (in Mr. Segal’s view), that Bernie (I assume Marcus, of the Marcus Autism Center and Autism Speaks) is still in the way of the wish to push Autism Speaks further into pursuing vaccines.

Kevin Barry, on the other hand, is a former president of Generation Rescue (an organization which especially then was very vocal about vaccine causation) who went to work as a consultant for Autism Speaks in 2006. While at Autism Speaks, Mr. Barry was apparently using others to post his messages to discussion boards. In this case, a call was sent out on the “Evidence of Harm” board for people to give input to Autism Speaks on the “epimdemic ‘debate’ “:

Hi Heidi, Confidential. I am not allowed to comment on the Boards. Would you post this to the EOH board as if you can upon it yourself? It is a page where people can comment on the epidemic “debate”. It would not hurt if Autism Speaks heard more feedback from EOH parents. Thanks, Kevin

In 2009 Autism Speaks lost Eric London (founder of NAAR and member of the Autism Speaks Scientific Affairs Committee) largely due to difference over vaccines. Earlier in 2009, Autism Speaks’ executive vice president of communications and awareness, Alison Tepper Singer, resigned prior to an IACC meeting in which a vote was to take place on vaccine related research. “Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting.” In the press release following her departure, Ms. Singer wrote:

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

The same day, Autism Speaks published a press release, Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process. Yes, Autism Speaks pulled it’s support for the Strategic Plan because it didn’t include vaccines. The press release included this statement from Bob Wright:

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

It appears that even though Autism Speaks has not made such strong statements about vaccine causation in the past few years, the sentiments remain strong within the organization. Strong enough apparently to push the president out.

If it is true that Mr. Roithmayr was pushed out over vaccines, this would mean that the fears of many are validated: that Autism Speaks has a public face adhering to the science of today, while inside they still have a strong faction, including the founders and executives, pushing for a focus on vaccines. And that there is no room for someone with an opposing view.


By Matt Carey

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Survey of Services Needs for Adults with Autism

11 Oct

There is a great need for more and more accurate information on the needs of autistic adults. Information will allow for better advocacy and changes.

The Autism Science Foundation and the UJA Federation of New York have teamed up with the Interactive Autism Network (IAN) to gather data in a survey.

Now is the chance to be heard. Autistic adults, parents of autistic adults and representatives of autistic adults are encouraged to participate. Details are below in a message from Alison Singer at the Autism Science Foundation.

Now is the chance to be heard.

We need your help!

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN) – the world’s largest online autism research project — and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time. IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

· An adult with ASD who is independent
(that is, you are not under anyone’s legal guardianship)

· The parent of an independent adult with ASD
(that is, your adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions)

· The legally authorized representative of a dependent adult with ASD
(For example, you may have legal guardianship or medical power of attorney for the adult with ASD)

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here.

To begin registration and the survey, click on the link below:
http://bit.ly/ORf7d5

If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org.

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most. Thank you in advance for your support and please forward this email to any individuals or groups who may be interested in participating.

Sincerely,

Alison Singer
President, Autism Science Foundation

The press release can be found on the Autism Science Foundation’s website.


By Matt Carey

Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders

9 Oct

In the past few years there has been a great deal of discussion on wandering and autism. Wandering as in elopement, running away, leaving a home or group. With people who are not independent this can obviously be a dangerous situation.

The U.S. Interagency Autism Coordinating Committee (IACC) had much discussion on wandering. The previous IACC had a Subcommittee on Safety and provided HHS Secretary Sebelius with a letter on the subject. One hot topic was whether a medical code should be created to track wandering as there was little hard data on the topic.

One result of this discussion was a study to answer: how prevalent is wandering? Anecdotally we knew the answer was going to be that there is a high prevalence. Now there are numbers to back that up from a study published in the journal Pediatrics.

Here is the abstract:

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.

RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.

CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.

Usually with papers like this I try to obtain a copy in advance to review when it is released. last week and this week are too busy for that. The Autism Science Foundation blog has a discussion of the paper in New Study Confirms Autistic Wandering is Widespread. Autism Science Foundation president Alison Singer was one of the forces behind getting this study accomplished, along with Lyn Redwood of SafeMinds and there was support from the National Autism Association and Autism Speaks.

Often on such high profile papers, the full paper is made available to the public. Apparently not in this case.


By Matt Carey

Autism Science Foundation to Develop Brain Tissue Awareness Campaign

3 Oct

One thing I learned at IMFAR last year was that brain tissue is critical to many areas of autism research and that there is very little tissue available for research. OK, that’s two things. This year saw an amazingly sad event where a large number of brain tissue samples were ruined in a freezer failure.

The ASF’s announcement is below and also on their website as Autism Science Foundation to Develop Brain Tissue Donation Awareness Campaign with Support from Simons Foundation

The Autism Science Foundation has received a two-year, $600,000 grant from the Simons Foundation to develop a multi-media campaign designed to increase awareness of the importance of brain tissue donation to further autism research.

“No effort is more important than raising awareness among families and scientists about the need for research on human brain tissue,” said Dr. Gerald Fischbach, Director of the Simons Foundation Autism Research Initiative.

Brain tissue research is critical for developing effective prevention and treatment options for autism but research in this area has lagged because of lack of tissue.

“In every area of medicine,” said Dr. Thomas Insel, Director of the National Institute of Mental Health, “new diagnostics and new treatments have come from studying the affected organ. In autism, we have been challenged by trying to understand a complex neurodevelopmental disorder without having enough brain tissue available for study. In so many ways, our ability to deliver for families with autism depends on the success of this effort.”

ASF President Alison Singer will serve as principal investigator on the project. Prior to founding the Autism Science Foundation, Singer served as Executive Vice President for Communications and Awareness at Autism Speaks, where she developed and co-produced the award-winning “The Odds” autism awareness campaign in conjunction with the Ad Council.


By Matt Carey

Autism Science Foundation live chat with Kevin Pelphrey Friday 12noon eastern time

5 Apr

The Autism Science Foundation will host live interviews with scientists and policy makers during the month of April (Autism Awareness Month). These will be hosted on their facebook page. These will be in a chat format where, as ASF puts it:

“Have questions for an autism researcher? Join us for a live, online chat tomorrow at 12PM ET where YOU can interview Kevin Pelphrey of the Yale Child Study Center.”

The interview/chat with Prof. Pelphrey will be held tomorrow, Friday April 5, at noon eastern time on the Autism Science Foundation facebook page.

Here’s more on Prof. Pelphrey:

Work in Dr. Pelphrey’s laboratory focuses on discovering brain mechanisms underlying the development of different aspects of social cognition including social perception (the initial stages of evaluating the intentions and goals of others by analysis of biological motion cues), theory of mind (the ability to make inferences about the mental states of others), and the perception and regulation of emotion. This work employs cognitive neuroscience methods including functional and structural magnetic resonance imaging, diffusion tensor imaging, imaging genetics, visual scanpath recordings, and virtual reality techniques.

The laboratory conducts studies focused on fundamental questions regarding the typical and atypical development of social cognition in children with and without autism spectrum disorders and other neurodevelopmental disorders. By studying the normal ontogeny of the brain mechanisms underlying social cognition and the abnormal development of these mechanisms in children with autism and other neurodevelopmental disorders, the Pelphrey laboratory is working to uncover the building blocks for complex, multi-faceted, social cognitive abilities.

Dr. Pelphrey has received a Scientist Career Development Award from the National Institutes of Health, a John Merck Scholars Award for his work on the biology of developmental disorders, and the American Psychological Association’s Boyd McCandless Award for distinguished early career theoretical contributions to Developmental Psychology. His research program is funded by the National Institutes of Health, the Simons Foundation, Autism Speaks, and the National Science Foundation.

Autism Science Foundation interview: Christie Buchovecky

18 Jun

Christie Buchovecky is a pre-doctoral research at Baylor College of Medicine. Her research project, Identifying Genetic Modifiers of Rett Syndrome in the Mouse, is supported by the Autism Science Foundation. Here is a video interview of Ms. Buchovecky from IMFAR 2011. It is very interesting to hear about Rett syndrome and the learning that has happened into the genetic link and the potential for treatment.

One thing I like about the ASF is their focus on funding new researchers, pre-doctoral and post-doctoral. It strikes me as highly important to pull new people into the field.

Perhaps this time I’ve gone too far….

19 May

OK, it isn’t me that’s gone too far this time. It’s Alison Singer of the Autism Science Foundation. Here’s her message:

What won’t I do to raise money for autism research? This time, I’ll be riding on the back of a motorcycle from Rockville Centre NY to the Montauk Lighthouse with the AML Bikers for Charity, who have chosen to support the Autism Science Foundation with their ride again this year on June 13. Am I scared? In a word, YES!. But not as scared as I am that we are not funding autism research fast enough. Having just returned from the International Meeting for Autism Research, I am more optimistic than ever that we are on our way to finding new treatments and eventually a cure for autism, but there is still a lot of work ahead of us and we need your help.

Please sponsor me as a rider in the AML Bikers for Charity by clicking on this link and then clicking the “donate” button underneath the thermometer. Your support will mean more funds for research that will make a difference for individuals with autism and their families.

The Autism Science Foundation is a 501(c)3 public charity. Donations are tax deductible to the full extent allowed by law. Learn more about ASF at www.autismsciencefoundation.org.

Here’s the donation link again: https://ssl.charityweb.net/autismsciencefoundation/activities/alisonsinger.htm

Want to join the ride? Click here to learn more and register as a biker.

Thank you so much!

Alison