For people who watch the public discussion of autism and vaccines, organizations like Generation Rescue, SafeMinds, the National Autism Association and TACA (and others) come to mind. One less public organization is Focus Autism. Focus Autism is a private foundation. In other words, they don’t accept donations from people outside the foundation. Here are tax forms submitted by Focus Autism in 2010 and 2011:
2010 tax form 990
2011 tax form 990
In 2011, Focus Autism pulled in $1.7M, which makes it as big or bigger than most of the other groups named above. If you peruse their website, it is clear that they have promote the vaccine-epidemic idea. Their “about” statement is:
FOCUS AUTISM is dedicated to finding answers about autism causation, no matter how inconvenient it might be. We believe in accountability, transparency and above all, a sense of urgency.
Childhood vaccine policies must be carefully administered. We demand strict avoidance of neonatal vaccination and vaccination of vulnerable children.
We must hold leaders of government, corporations, and the medical establishment accountable for failures that have led to the autism epidemic.
Leaders in the field agree there is a subset of vulnerable children who are predisposed to vaccine-related injury. We want those children identified, so that we do not needlessly harm innocent children.
Millions of dollars have been funnelled into genetic research in a frantic search for the single gene or a small number of genes responsible for the autism epidemic. Emerging consensus rejects a purely genetic cause. Most experts now agree that the primary causes must be a combination of genetic and environmental factors.
They have funded a mix of projects and groups. In 2010, most projects were not vaccine-focused. In 2011 they funded: Autism Speaks ($51,000), the Marcus Autism Center ($50,000), projects in Africa and many other non-vaccine focused projects. In 2011, Focus Autism funded vaccine-oriented groups such as the National Vaccine Information Center ($37,500), SafeMinds ($70,000), Generation Rescue ($40,000).
In 2011, Focus Autism added to its board Louise Kuo Habakis and Katie Wright, both vocal proponents of the vaccine-causation idea. The board currently includes Brian Hooker, who is also a vocal proponent of the idea. There has been some discussion lately about Mr. Hooker’s involvement with the autism hearing held by the Committee on Government Oversight and Reform last year. The idea being presented that Mr. Hooker, lone citizen, made contact with members of congress and got the hearing moving.
Consider that Focus Autism was founded and is apparently run by Barry Segal. Mr. Segal’s family foundation has over $50M in assets, and seems to be doing a great deal of good work, especially in sub-saharan Africa. Mr. Segal’s company sold for an undisclosed amount, but had sales of $1.7B (yes B) in 2006.
Here is a picture from Facebook showing Mr. Hooker in the audience of the congressional hearing from Focus Autism’s facebook page. Sitting next to him is Mr. Segal’s wife, then Mr. Segal.
I consider it possible he had a bit more support in his efforts than, say, I might have.
Focus Autism includes in its list of partners: Age of Autism, EBCALA, the National Vaccine Information Center, the Canary Party and the Dwoskin Family Foundation. All groups promoting the idea that vaccines cause autism.
As to the split mentioned in the title of this article, consider this short blog post on the Focus Autism website: The Fragmented Autism Community:
The so called autism community is represented by:
#1 Autism Speaks, which because of Bernie-Julie thing refuses to meaningfully go after environmental issues, especially vaccines.
#2 Safe Minds, another disaster and I don’t know (or care) what their agenda is.
The rest of the community is fragmented, acts like our congress, accomplishes nothing and has an approval rating similar to congress. In both cases we need to change.
“Bernie” is most likely Bernie Marcus, co-founder of Home Depot and founder of the Marcus Autism Center. I’m not sure who “Julie” refers to. SafeMinds, well that reference is clear. It is also interesting in that Focus Autism donated money to both the Marcus Autism Center and SafeMinds in 2011. Somewhere in the past couple of years, there seems to have been a falling out.
Given some of the current discussion about the way the congressional hearing was put together, specifically Mr. Hooker’s and SafeMinds’ roles (see here, here and here), it is interesting to see the organization he works with taking such a harsh stance on SafeMinds.
The name Barry Segal was familiar to me, and it took me a few days to recall where I saw it before. It was on a discussion at the Forbes website. I usually avoid bringing discussions held on other sites to this blog, but I think these statements show the possibility of further rifts, both between autism organizations and within organizations. Here are the statements made by Mr. Segal (or someone using his name, but I have no reason otherwise) at Forbes:
First this one (actually two, it was repeated):
I guess you are aware that in 1960, 3 years before the measles shot, 100 people died of measles. In 2012 over 80,000 of the babies born that year will end up on the spectrum. Bob Wright knows certain children are vulnerable to vaccines but Bernie Marcus won’t let him go there. Do you really give your child or grandchildren a Hep b shot at birth, or do you have them practice safe sex till they are 6 years old. (That is when the shot wears off)
Indicating his opinion that Bob Wright (founder of Autism Speaks) wants more vaccine research but that Bernie Marcus (Marcus Autism Center and Autism Speaks) is blocking it.
Mr. Segal went on:
I won’t discuss Hepatitis B with you except that the following five countries, Denmark, Sweden, France, Germany and Japan only give the Hepatitis B vaccination to children whose mothers test positive.
As far as Bob Wright, I have met with him and he shared with me, the following thoughts:
1.That there needs to be more vaccine research
2.That there should be no more thimerosal in any vaccines or medicines
I had dinner with Bernie Marcus in Florida. Towards dessert, I mentioned what Bob Wright had said and he told me, “There is no thimerosal in this country today,” to which I replied, “ You’ve got to be kidding me, you can go to your local drug store and get a shot of thimerosal in your flu injection.” He is clueless and after starting the Marcus Autism Center and hearing Bob Wright had an autistic grandchild, he reached out to Bob Wright to form Autism Speaks with the intent that they do not address the vaccine issue. Peter Bell and Holly Peete both have vaccine injured children and will not vaccinate their subsequent children as mandated.
I had breakfast with Peter Bell on 12/8/11. He explained to me that the increase in the vaccinations alters the immune system. When he lived in CA, he didn’t have to vaccinate his children (philosophical exemption is available in CA) but when he came to NJ, he slowed it down as much as possible. Peter suggested Tylenol could be part of the problem.
Rodney Peete said in his book, “NOT MY BOY!” co-authored by Danelle Morton:
“At home that night, R.J. had a terrible fever and started shaking violently, just short of something like a seizure. Holly called the pediatrician to ask him what could have caused this. Should we take R.J. to the hospital? The doctor was unruffled and told us it was not a reaction to the shots. He recommended that we give R.J. some Tylenol to help him with the fever and he promised that R.J. would be fine. R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room late that night. We believe he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about four years.”
As far as vaccine safety, the problem is much more than just thimerosol. Today, the autism incidence rate is 1 in 88 and this is for children born in 2000. If we apply a more conservative 8% growth rate to this rate, we’re looking at over 80,000 children born this year being on the spectrum!
In these two suggesting that Peter Bell (Autism Speaks), Holly Robinson Peete and her husband Rodney Peete (HollyRod foundation, Autism Speaks) are also proponents of the vaccine-causation idea.
All this again indicating tensions between and within autism orgs over the topic.
For anyone who thinks the vaccine-autism-epidemic idea is going away from the public discouse any time soon, keep in mind that this is not a grass roots movement. There are millions of dollars being spent by these groups every year. Much of it from wealthy donors.
Mr. Segal had some very interesting things to say about the departure from Autism Speaks of their previous president. That is discussed in Was Mark Roithmayr pushed out of Autism Speaks over vaccines?
By Matt Carey