Harvard's Autism Brain (down the) Drain
By Teresa Conrick
On May 31st, it was discovered that the federally funded Harvard Brain Tissue Resource had a problem. A freezer containing one-third of the brains of those who had an autism diagnosis was thawed. Fifty-four brains were now decomposing yet how this happened remains a mystery. Dr. Martha Herbert, MD, PhD, assistant professor of neurology at Harvard Medical School and a pediatric neurologist at Massachusetts General Hospital has also done brain research using brains of those diagnosed with autism. Dr. Herbert was contacted and reported back to us that this was not her lab.
We are reading all over the internet: "The freezer failure came despite two alarm systems that are designed to alert security and staff should there be a malfunction. Both alarm systems are connected to separate circuits, and the room containing the freezer is monitored around the clock, the hospital said. Twice a day temperature gauges on each freezer are inspected. Each freezer was reading normally, at minus 79 degrees centigrade. It was only when the door was opened that it became evident that the freezer had malfunctioned. Freezer failures are not uncommon in research, but for a freezer and two alarm systems to fail simultaneously is perplexing."
Yes, perplexing and heartbreaking as also in May and also recently in the news, a very young boy with an Autism diagnosis tragically died. We learned that Alexi LePoer, like so many children with an autism diagnosis, snuck out of his home and was later found at the bottom of a nearby pool. It happens over and over, the siren call of the lake, pool, pond to the young child and then the last breath of life. It is a nightmare that is increasing right along with the epidemic numbers of children being diagnosed with Autism. The LePoer family described their feelings and thoughts regarding their tragic loss. These wonderful and generous parents decided that donating their son's organs could help others, especially his brain. Alexi was severely impaired and had just started to use a few words and his regression into an Autism diagnosis is all too familiar:
"Like many children later diagnosed with autism, Alexei hit normal developmental benchmarks at first, making his later descent that much harder on the couple. There was no family history of neurological disorders, and the couple thought they were doing everything right.
But then Alexei started mumbling, getting so frustrated when he couldn’t be understood that he would bang his head until being secured in a highchair for safety. The child who had earlier joyously clapped along to “Happy Birthday’’ was soon putting his hands over his ears and crying when the same song came on. And he would jump non-stop."
Alexi's father did what so many of us have done -- he went looking for the clues:
"LePoer took time off from work, throwing himself into autism blogs, websites and research papers as a way to cope — even if it became something of an obsession.
“If some stranger came into your house and hurt your child, you’d want to know why,” LePoer said. “It needs to be understood. It needs to be stopped.”
Hoping to find more answers, The LePoer family enlisted in a research study:
"The family soon enrolled in a study of the disorder focused on younger siblings, a project overseen in part by Dr. Margaret Bauman at the Lurie Center for Autism in Lexington, formerly known as Ladders and jointly run by Spaulding Rehabilitation Hospital, McLean Hospital, Massachusetts General Hospital and its children’s campus.
In the second version of their Department of Defense-funded study, Bauman and her team are collecting placentas and amniotic fluid at birth, as well as urine, stools, blood, breast milk, saliva, hair and fingernails at regular intervals later. They also measure brain electrical activity and record their subjects’ play breaks, social interactions and motor skills."
Little did the LePoer's know that a soon to happen tragedy would extend that research right into their son's actual brain:
"Around 2 a.m. the night of his son’s drowning, he approached his wife after looking up the information again online. Pathologists and medical examiners typically have to preserve donated brains on ice or in coolers within 24 hours of death, preferably less.
“I didn’t know what to think,” Ivana LePoer said. “I knew it was for a good purpose but it was hard to take in.”
With his wife’s consent, LePoer contacted the Harvard Brain Tissue Resource Center, better known as the “Brainbank” and housed at McLean Hospital in Belmont. The couple designated their donation for the Autism Research Foundation, also run by Bauman of the sibling study.....Alexei’s brain is the youngest the foundation has ever received, providing an even earlier window into autism. It comes with a wealth of valuable clinical data."
"LePoer and his wife believe vaccines played a role in Alexei developing autism, a theory scientists have disproven but that still tantalizes many parents.
Instead, Bauman thinks the disorder is likely genetic and influenced by environmental factors — encountered either in the womb or after birth. One colleague recently told her there could be 100 total genes at play, with each child possibly influenced by a smaller, individualized bundle."
The use of the lost brains described here has such historical importance:
"The damage to these brains could slow autism research by a decade as the collection is restored, said Carlos Pardo, a neuropathologist and associate professor of neurology at Johns Hopkins University.
The collection, owned by the advocacy and research organization Autism Speaks, “yields very, very important information that allows us to have a better understanding of what autism is, as well as the contribution of environmental and immune factors,’’ said Pardo, whose 2004 study of brains stored in the bank was the first to find that autism involves the immune system. “The benefit has been great.’’
The hospital is investigating whether the brains might still hold value for genetic research, and initial indications are positive.
"It appears that the DNA may be in a reasonable form for genetic studies," Benes said.
It seems disturbing that GENES are still being glorified as the answer to Autism's increases. We see daily in the news and in research how the IMMUNE SYSTEM is involved with the BRAIN. Since vaccination is the hand of science and not nature, manipulating the immune system, it is not an unreasonable idea, yet it still remains controversial.
With all that has happened at the Harvard Brain Tissue Resource Center, it is unknown if Alexi's brain is one that has been lost to "freezer failure." It would be a double tragedy given that for the LePore's, donating his brain gave them a sense that they could still help in the research of what happened not only to their child, but to so many others:
"LePoer knows a single donation is unlikely to lead to a major breakthrough, but says, “To know he’s helping is what keeps me going.”
Through their donation, the family will receive a report on what researchers discover about Alexei’s brain"
Will this family ever receive a report on what was truly discovered? Has the truth about Autism and specific damage to brains showing immune system injury become so horrific that some would tamper with evidence?
"Benes said the situation is so unusual - the perfect storm of alarm and thermostat failure and the concentration of samples - that she cannot rule out foul play . She said she has not spoken to law enforcement officials, pending the completion of the internal investigation.
In the interim, she said, McLean will upgrade security in the freezer room, which is under lock and key and watched by a surveillance camera."
UPDATE:
"The donated brain of a 4-year-old Westborough drowning victim stored at the Harvard “Brainbank” was not among those that thawed — and were damaged — after a freezer and alarm failure, the facility has said. When he received the call from the Brainbank, his heart initially sank, Christopher LePoer said — lightened a little once he found out his son’s brain had not been damaged further and could still help with research.
“It’s kind of a mixed bag,” he said, referring to the larger setback. “I’m just grateful he’ll be able to continue to help in this horrible situation.”
The head of the Autism Research Foundation, Dr. Margaret Bauman, expressed relief by email that their donation was not harmed but was not available for further comment.
Teresa Conrick is a Contributing Editor to Age of Autism.
A triple loss.Loss to the parents who so generously allowed
their precious child's brain for research.Loss to the autism
community as answers will be delayed as to the root causes.Loss to the researchers who can not complete their extremely important work.
Perhaps they do not want to find the answers and this was a way to delay the process.It is a great loss,a very painful and disappointing loss.
Posted by: oneVoice | June 23, 2012 at 01:03 PM
Thank you, Teresa!
Hardly a coincidence.
For my thoughts, see http://vactruth.com/2012/06/21/autism-brain-freezer-malfunction/.
Posted by: Jennifer Hutchinson | June 21, 2012 at 12:28 PM
Apparently, there must have been some shocking, new worthy evidence seen in these autistic brains that would've made places like autism speaks, all the pharm companies and some doctors very nervous. Autism speaks sucks.
Posted by: Yvette | June 16, 2012 at 05:26 AM
Sabotage by some neurodiversity type at the hospital.
Posted by: Theodore Van Oosbree | June 15, 2012 at 12:24 PM
Apparetnly these weren't martha herbet's brains.... but it is interesting that this happened so close to the release of her book from Harvard.
Posted by: Billie | June 15, 2012 at 12:11 PM
A researcher (who I will not name) at autism one told me that they were testing brains of autistic children at Harvard right now for mercury and that the preliminary results were very, very conclusively high. Maybe that person will read this and comment about how this research will be affected.
Posted by: Paranoiaselfdestroya | June 15, 2012 at 11:45 AM
Kapore:
"I've come to the conclusion that paranoia is a higher form of consciousness"
I agree.
If I could do my life over again and know what I know now - paranoia would be the trait I would work on the most - to enhance.
Posted by: Benedetta | June 15, 2012 at 08:21 AM
"... I don't blame you guys a bit for not donating your children for research...."
*************
My child has already been part of the sickest medical experiment in the history of mankind.
Even if I was willing to donate in the name of research, it would be an absolute waste of time. The medical establishment is incapable of conducting an honest study into the causes of autism. Because they already know that autism is caused by vaccines they created. And the only studies they're willing to endorse, will always fund academic prostitutes who'll say anything they're told to say.... for the right price.
As for Autism Speaks, those guys are vermin too. And they will never represent my son.
Posted by: Barry | June 14, 2012 at 08:33 PM
If they don't involve the police until they finish their own investigation, they're guilty of altering and contaminating the crime or accident scene, as alluded to by Bob. It's something the police should be involving themselves in from the get go, without their request. If someone were badly beaten or murdered in my house, would the police let me finish my investigation before beginning theirs? Would they wait for me to ask them to investigate?
Posted by: Carter's Daddy | June 14, 2012 at 06:58 PM
I don't blame you guys a bit for not donating your children for research. Bad enough that so much of it (research) is pointless but Autism Speaks better really be looking into what happened here, which was research that actually looked productive.
Posted by: Jen | June 14, 2012 at 05:42 PM
Whenever I read about the repetitive behaviour of children with Autism I am reminded of the case of the Bicycle boy - treated as a Psychiatric disorder but found to be a bacterial infection- Lyme Disease and with appropriate antibiotics a good recovery this can be found here http://www.canlyme.com/bike.html
although Pam Weintraub wrote a series of articles http://www.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one
At last doctors around the World US, Canada, France are realising that some cases of Autism are driven by bacterial infection among other toxins and that long term antibiotics treatments can help some recover.
http://lookingatlyme.blogspot.co.uk/2010/07/autism-videos.html
http://www.arte.tv/fr/L-enigme-de-l-autisme---la-piste-bacterienne-/6714492.html
http://lookingatlyme.blogspot.co.uk/2010/07/is-it-really-autism.html
http://lookingatlyme.blogspot.co.uk/2010/07/is-it-really-autism.html
The loss of these brains is indeed a setback but even with fewer brains research needs to be the right research - for far too long research has centered around genetics but that alone will not solve modern chronic illnesses developing better testing and looking for pathogens and other environmental assaults may go a long way into helping these lost children.
Two researchers independently found Borrelia( Lyme Disease spriochetes in the brains of patients with Alzheimer's I heard recently that one of these doctors Dr Alan MacDonald will be working with researchers on the Alzheimer's brains from Harvard- I wish him every success - and hope his work as much of his past work will help undo some of these complex illnesses. He has also found Borrelia spirochetes in chord and fetus indicating transplacental infections in babies.
Posted by: Joanne Drayson | June 14, 2012 at 05:13 PM
Ditto what Mr. Gallup said. Fat chance anyone involved with Autism Speaks or any earlier iterations will ever look at my boys brains. Autism research is a total joke.
Posted by: dana read | June 14, 2012 at 04:38 PM
OMG.. This is so conveinent for them to COVER UP... something, or someone, must have been getting really close to an answer... I am not at all shocked after what the media, has done to DR. Andrew Wakefield.. currently and in the past. I can tell you this, I don't buy an ounce of this and NEVER WILL... something SMELLS.. FOUL... And I HOPE TO GOD.. THEY ARE FOUND OUT..AND PROSECUTED TO THE FULLEST.. EXTENT OF LAW
Posted by: LENORA COOKE | June 14, 2012 at 02:38 PM
I would suppose the IACC will use the Harvard incident to once again delay any Autism progress for at least another decade.
They will speculate on the "genetic breakthroughs" that they were so close to... but now have to be done all over again.
How many freezers were side by side in the lab ? Are the same hacks now in charge of investigating themselves ?
Posted by: cmo | June 14, 2012 at 02:14 PM
Dr. Carlos Pardo and his team at Johns Hopkins as well as other research teams have made tremendous progress in understanding the brains of children with autism. They are zeroing in on a problem with the microglia which, not surprisingly, are the cells that provide the brains immunity. In autism brains the microglia often look clumbed around neurons and appear somewhat shriveled (see stories below). Here is more info:
Researchers map microRNAs in autism brains
http://sfari.org/news-and-opinion/conference-news/2011/society-for-neuroscience-2011/researchers-map-micrornas-in-autism-brains
Molecular mechanisms: Autism brains show 'angry' microglia (photos)
http://sfari.org/news-and-opinion/in-brief/2010/molecular-mechanisms-autism-brains-show-activated-immune-defense
Molecular mechanisms: Microglia abnormal in autism brains
http://sfari.org/news-and-opinion/in-brief/2012/molecular-mechanisms-microglia-abnormal-in-autism-brains
Bone marrow transplant alleviates Rett symptoms in mice
http://sfari.org/news-and-opinion/news/2012/bone-marrow-transplant-alleviates-rett-symptoms-in-mice
Posted by: Sarah | June 14, 2012 at 12:37 PM
I've come to the conclusion that paranoia is a higher form of consciousness. Addressing the genetic link to all these autoimmune disorders, one would think that the doctors would begin asking the right questions of parents so to figure out what children are genetically vulnerable to autoimmune diseases. If some children have fragile immune systems genetically then any insult to the immune system, particularly vaccines, could trigger an autoimmune response. I doubt people with diagnosed autoimmune disorders are taking vaccines, or maybe they are...I know that people who have had cancer are exempt. Sometimes I think that children are treated with disregard because they have such small voices, while a cancer patient has more clout. I doubt people with HIV take vaccines. Again, the HIV community has more clout.
Posted by: Kapoore | June 14, 2012 at 12:37 PM
What do you want to bet the security camera was also not working, and/or the tapes recycled? It smells. Where did Courchesne et al get their brains for that specious brain study they published last year?
Posted by: Garbo | June 14, 2012 at 12:36 PM
I'm with Ray Gallup. They've had plenty of time to figure out this so-called "mystery". If my son dies before I do, not one cell of his body will be going toward "research" into a problem we all solved over a decade ago. Enough already. Our kids deserve at least an ounce of dignity after a lifetime of medically-induced pain and suffering.
Posted by: Donna L. | June 14, 2012 at 11:39 AM
Harvard, in this rare instance, is comfortable with being labeled incompetent. I think that's only because it hides what really happened. Under any other circumstance they would be fighting like crazy not to be criticized in such a way. Same goes for the pediatricians these days. Why is everyone so comfortable looking stupid? Pediatricians are willing to be told they have misdiagnosed Autism for 30 years on. Because the alternative is so ugly.
Posted by: Alison MacNeil | June 14, 2012 at 11:31 AM
Thank you Teresa for covering this story. It got all kinds of coverage in the press. Here are two stories. Notice that the WSJ said, "The brains were donated by families of people who had autism." "People"? I'm sure the vast majority of donations were children's brains. "Foul play"? How could that be if "the freezer is in a tightly secured room under 24-hour surveillance"?
WALL ST. JRNL: Brain-Bank Glitch Mars Research Into Autism
http://online.wsj.com/article/SB10001424052702303901504577460690416098130.html?
"The failed freezer had stored 150 brain specimens, including 53 earmarked for research into causes and treatments of autism, a condition characterized by poor social skills and difficulties with communication.
"The 53 brain specimens are part of a collection of 168 brains belonging to Autism Speaks Inc., a New York advocacy group that was storing part of its collection at the tissue center. The brains were donated by families of people who had autism."
BOSTON GLOBE: Freezer failure at brain bank hampers autism research
http://articles.boston.com/2012-06-11/news/32177708_1_brain-bank-autism-research-freezer
"A freezer malfunction at Harvard-affiliated McLean Hospital has severely damaged one-third of the world’s largest collection of autism brain samples, potentially setting back research on the disorder by years, scientists say."
We have to wonder how this is "potentially setting back research on the disorder by years," when experts know absolutely nothing about autism right now. There's no known cause or cure. There's nothing a mainstream doctor can tell a new mother so that her healthy baby doesn't also end up on the autism spectrum. After 20 years of soaring autism numbers officials are no closer to knowing anything for sure about autism than they were when my son (25) was born. It seems they're only interested in pretending that it's a genetic disorder and that vaccines have nothing to do with it.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | June 14, 2012 at 11:12 AM
Is it not perhaps most plausible that this relates to fraud in some already published research.
Posted by: Inspector Thaw | June 14, 2012 at 10:32 AM
I am going with sabotage on this? Why? Our national security is under attack but not in the traditional sense. I think this was targetted and because we are living in an age where sabotage, cyberattacks and spying is rampant. Research labs working on sensitive projects are potential targets.
Many US industries across all sectors have reported cases of spying and cyber attacks. I think Harvard should investigate anyone who might had access to that lab who could have disabled the alarm.
Read
"Hacks make large-scale sabotage possible", USA Today
http://www.usatoday.com/tech/news/story/2011-10-30/hacker-sabotage/50980234/1
"Enter the Cyberdragon" Vanity Fair, Septemebr 2011
http://www.vanityfair.com/culture/features/2011/09/chinese-hacking-201109
Lab sabotage deemed research misconduct (with exclusive surveillance video)
http://blogs.nature.com/news/2011/04/lab_sabotage_deemed_research_m_1.html
More On Lab Sabotage- Scientific American
http://blogs.scientificamerican.com/observations/2011/12/05/lab-sabotage-some-scientists-will-do-anything-to-get-ahead/
Posted by: Sarah | June 14, 2012 at 10:07 AM
"You're only paranoid if you're wrong."
It doesn't seem out of the realm of possibility that the freezer was deliberately turned off.
Another interesting development late last week was the late Friday news dump that pediatric type one diabetes has increased over 20% since 2002 over an eight year study period. One of the experts quoted in the article said almost verbatim, we don't know what is causing the increase, it could be environmental. it could be genetic, we just don't know. Sounds really familiar. That quote was almost immediately removed from the on line article at Fox News linked to WSJ.
Diabetes of course leaves measurable metabolic markers. I suggest the the hit to the brain caused by vaccine injury could leave a metabolic marker, as well, which might be evident during an autopsy. Mainstream, evidence based medicine seems to make a point of assiduously avoiding the study of large groups of children with autism, deceased or alive. In that context, the destruction of the brain tissues fits a pattern of avoiding medical work ups on these afflicted children and adults.
Posted by: ottoschnaut | June 14, 2012 at 09:52 AM
The only way to thaw a freezer with two discrete temperature alarm systems, and twice a day temperature surveillance... is for someone to go out of their way to circumvent those safeguards.
In the hands of honest and capable researchers, these brains would be a smoking gun to show that vaccines do cause Autism. Whoever sabotaged this freezer, did it to ensure that this truth never sees the light of day.
Posted by: Barry | June 14, 2012 at 08:47 AM
Local law enforcement which would have jurisdiction in the matter:
Belmont Police Department: http://www.belmontpd.org/Pages/BelmontPD_Webdocs/contact
Posted by: Harry Tembenis | June 14, 2012 at 08:38 AM
Here is the Boston area media coverage for your review…
http://www.myfoxboston.com/story/18755188/2012/06/11/boston-area-autism-brain-collection-damaged
http://www.boston.com/news/local/massachusetts/articles/2012/06/11/freezer_failure_at_brain_bank_hampers_autism_research/?p1=News_links
http://www1.whdh.com/news/articles/local/boston/12007711177974/freezer-damages-brain-samples-used-to-study-autism/
http://www.wcvb.com/health/Autism-brain-samples-damaged-after-freezer-problem/-/9848730/14774256/-/10fo3h7z/-/index.html
http://boston.cbslocal.com/2012/06/11/54-brain-samples-compromised-after-freezer-failure-at-mclean-hospital/
http://www.necn.com/searchNECN/search/v/57516242/autism-brain-samples-damaged-after-freezer-problem.htm?q=brains
http://bostonherald.com/news/regional/view.bg?articleid=1061138124
Posted by: Harry Tembenis | June 14, 2012 at 08:36 AM
They can tell who's been in and out of the room since it's under surveillance. Someone tampering with the thermostat and alarms would stick out like a sore thumb.
If the attack was cyber, that might also leave footprints.
Posted by: Carol | June 14, 2012 at 08:11 AM
"The collection, owned by the advocacy and research organization Autism Speaks,..."
"The hospital is investigating whether the brains might still hold value for genetic research, and initial indications are positive."
WHAT A COINCIDENCE
Put me down as one who never believed for one minute this was an accident.
Posted by: Tim Kasemodel | June 14, 2012 at 07:57 AM
A sealed freezer unit of industrial / medical specifications would take a considerable length of time for it to reach a point where biological samples contained within it started to 'decompose'.
I'll be interested to read how this goes.
Posted by: Interesting | June 14, 2012 at 07:54 AM
Before there was Autism Speaks, there was the National Alliance for Autism Research (NAAR) that carried on Autism Tissue Program that Dr. Margaret Bauman was involved with. I know that Bauman along with Eric London the founder of NAAR believed in genetics and not in any autoimmune/vaccine link to autism.
See...........
Several NAAR-funded researchers taking part in the High Risk Baby Sibling Autism Research Projectare mentioned in the Newsweek story, including ........Dr. Margaret Bauman of Harvard University/Massachusetts General Hospital.....
NAAR played an instrumental role in helping Newsweek photo editors find a family willing to be photographed for the cover.......
Additionally, NAAR was instrumental in establishing the Autism Tissue Program, a parent-led brain tissue donation program for autism research.
http://www.autismspeaks.org/news/news-item/newsweek-baby-sibling-research
As the parent/father to Eric Gallup with severe autism and aggressions, I decided along with my wife that Eric would never be involved with this program. This program will do nothing to improve the situation concerning the epidemic of autism since it will never look at the autoimmune/vaccine link. I consider it another NIH/NAAR/Autism Speaks autism WPA project that goes nowhere.
Another example of NIH/Cure Autism Now (CAN)in place of NAAR/Autism Speaks autism WPA project that goes nowhere:
Male monkeys pay to see female bottoms
http://www.msnbc.msn.com/id/6892037/ns/technology_and_science-science/t/male-monkeys-pay-see-female-bottoms/
In summary, when it comes time for Eric to pass on I rather know that he will be buried with dignity and not have his body cut up for medical research that achieves NOTHING.
Posted by: Raymond Gallup | June 14, 2012 at 07:35 AM
"Benes said the situation is so unusual - the perfect storm of alarm and thermostat failure and the concentration of samples - that she cannot rule out foul play . She said she has not spoken to law enforcement officials, pending the completion of the internal investigation."
Whether "criminal" or "careless" .. if there is even a remote chance this "perfect storm" may be the result of "foul play" .. law enforcement officials MUST be immediately informed. Even CSI viewers know protecting the crime scene from further contamination is critical to any ensuing investigation.
Posted by: Bob Moffitt | June 14, 2012 at 06:45 AM