Research -Need more, and faster

[norcalmom]

How often have we heard that we need more research? We have a handful of clinicians mostly - and a few "true" researchers - working on pans and pandas. I think most compelling research has come from or is in the works from: Cunninghams, Swedo, Hornig, and Agalliu.

 

I've spent number of hours over the past few days on the Broad Institute Website, as well as the The McGovern Institute site. PANS and Pandas not mentioned anywhere. There are millions in research dollars here and hundreds (thousands) of researchers looking at aspects of biological functions that are implicated in the PANS hypothesis. Genetics, Immunology, Neurology, and Psychiatry.

 

http://www.broadinstitute.org

http://www.broadinstitute.org/psych

http://mcgovern.mit.edu/about-the-institute

 

Broad is focused largely, but not entirely, on genetics. The Stanley Institute and McGovern Institute are focused more on the Brain and Psychiatric conditions. But of course, there's overlap between all of them.

 

The Director at Stanley Center for Psychiatric Research (part of Broad) is Steven Hyman, who was previously Director of NIMH (must know of heard of Swedo...)

 

It seems to me the fastest way to get some research done and leverage existing resources, would be to take some conventions, tests, (etc) that have already been developed and either test some pandas specimens or apply a pandas convention. Much the way that Drittan Aggaliu did. He developed a technique to evaluate the BBB in mice for stroke victims. That's is basically his life's work. Somehow he became interested in pandas. He induced repeated strep infection to see what might happen to the tight junction of the BBB in mice - to see if the same thing that happens after a stroke (tight junctions fail)- might happen with repeated strep infection. He did this because for him - and all the researchers - a big part of the PANDAS hypothesis "broke down" when it cam the BBB. The antibodies are too large to cross it. He had already spent years of his life developing the technique to look at the BBB in live mice. Pandas gave him something else to look at beside stroke. A relatively small investment in time leveraging many years of research. Still waiting for results and a paper on it, but looks like very promising research, from an unlikely source. How do we garner more interest like this?

 

Theres money and grants that exist for this research. We need some researchers to become interested, or their directors to direct some investigation of pans/pandas using their techniques.

 

Maybe a start would be having some pans/pandas researchers attend or present at some meetings. Sept 9, 203 they are hosting one called

Symposium on the Emerging Genetics and Neurobiology of Severe Mental Illness. There are a large number of videos and summaries from last year here:http://www.broadinstitute.org/scientific-community/science/programs/psychiatric-disease/symposium/2011/symposium-emerging-genetics

Anyone have any experience in the medical research field - have any "in's" - with either the Broad Institute or another similar research program? Suggestions???

 

I don't know if the Sept 9th is open to non-med, but Im thinking of going if it is.

[LNN]

I had the privilege of meeting Dr Swedo at a conference a few years ago. Pandas is not a simply a research question for her, it's personal. I think that's also true for Leckman. They have been touched by real kids, real heartache that they've taken personally. The same is true for Patrick Kennedy, who now is the driving personality behind One Mind for Research (execs from Braod and McGovern are on the advisory board of One Mind). In some ways, I sense this must've also happened to Tom Insel, who seems to speak on the subject of mental health from the heart.

 

I've always felt that are kids were perfect models for brain diseases because they are "normal" when healthy and have mental illness when they have an infection. So theoretically, you could peak into their brains and have "before," "during" and "after" pictures. What changes when they get sick? Can you measure longitudinally and measure changes that could zero in on root causes? Could you measure the same person's BBB and measure changes?

 

As long as Pandas/Pans is considered to be rare, you're not going to interest career researchers in it because their work won't be impacting hundreds of thousands of lives the way cancer, MS, alzheimer's research will. They need to be touched by it personally and also see that the kids represent a unique way of studying a disease. How that happens, I'm not sure.

[filinha1]

I thought about this topic you're introducing after watching an excellent documentary called How To Survive a Plague (review: http://movies.nytimes.com/2012/09/21/movies/how-to-survive-a-plague-aids-documentary-by-david-france.html?_r=0 ), on the activists during the early years of the AIDS epidemic. I went so far as to find the current contact info for a couple of the men who were instrumental in getting the govt. and the pharmaceutical industry to pay attention and make timely changes. I haven't pursued anything after that.

 

With Obama's BRAIN Initiative funded with 100 million for its first year to start - http://www.npr.org/2013/04/05/176339688/president-obama-calls-for-a-brain-initiative - I hope and believe the connection between mental illness and biological factors will get plenty of study and support.

 

I have no experience with activism other than doing what I can for my own child, but I'm very interested in working with anyone else who wants to actively push for more research on PANS.

 

Heather

[pr40]

It seems that PANDAS has to have TWO priorities. Research is one of them. The other one is establishing PANDAS protocol so that children with psychiatric symptoms are REGULARLY tested for infections and auto-immune issues.

the two, i guess, have to be pursued at the same time. You get more money when you show that there is more application for your findings.

[T_Mom]

YES -- we need more research -- We also need reporting by the doctors about the results they have seen--

 

Imagine this: An article which presents case-study reports of the key PANS treating top-5 doctors.

 

How many kids for the case study if it was done by the top five PANS treating doctors? 25 cases? 250? 1000?

You get my point.

 

We need those who know, and have seen to report.

 

The doctors to report on and write about their experiences and treatment effects for the medical field, to present at conferences of ALL types, and to educate.

 

Research in controlled studies is critical and funding is needed, and with the recent focus on biological causes of mental illness -- as well as the NIMH taking a stand that they will pursue a line of inquiry to find the cause behind the mental illnesses in the "DSM" , Dr. Insel being at the helm, and Francis Collins (NIH) being focused on the brain, it is the time.

 

I so dearly hope -- as we (on a personal note), appeal our insurance company for an immune-modulating therapy which is greatly needed.

Edited May 28, 2013 by T.Mom