News from the front...

Dear Friends,
​I hope everyone has survived the spring “break” - we went to Philadelphia for Passover and we enjoyed seeing Jon’s parents and celebrating Passover with lots of discussion on the meaning of slavery and whether we are still slaves today in some ways. Dov’s comment was: “Some people are oppressed by the economy”, (can’t argue about that!) But as always with family travel, racing through airports with Dov and the kids takes it out of me.

​I wanted to share some good news with everyone, which is that I was recently appointed to the National Institute of Mental Health (NIMH) Advisory Council. This is a big deal because one can have a real effect as an advocate on a very large scale. The Council is composed of largely of professionals with a handful of lay advocates such as myself who together make the final decisions about what will be funded in mental health related research grants. The NIMH has a two-tiered system where review committees made up of scientists and clinicians, review the scientific merit of proposed research projects, after that we (the Advisor Council) are given the charge of determining the relevance of the research – meaning will it be helpful to families and those effected by the mental disorders that are being addressed by the grants? This year’s budget was $14 billion however another $3 billion was just pumped in through the Stimulus package. So the good news is more money for mental health research, including autism! But there is so much to learn about how the system works and fast, in order to have input on how the unexpected funds should be used. I have been asking that some of the funds go toward research focused on nonverbal and low-communicating people with autism.

​A quick update on the High Risk/High Impact project that I spear-headed last year through Autism Speaks: it’s called Characterizing Cognition in Nonverbal Individuals with Autism (CCNIA) and the group first met in June 2008. Two projects were funded and are getting underway right now. The first is a research project in the lab of April Benesich at Rutgers University (NJ), using EEG and ERP measures to track cognitive activity in young, nonverbal kids with ASD – this exciting technology taht does not require spoken language or gesture, but only spontaneous looking which we are hoping can shed light on the cognitive capability in the nonverbal children. The second project is in Connie Kasari’s lab at UCLA and it builds on Connie’s previous work using a very successful joint attention intervention for young kids with ASD. Among the children treated there is always a group of “non-responders”, (aproximately 15-20%) and guess what? They are usually the nonverbal kids. So Connie is adding an arm of augmentative communication intervention onto the joint attention treatment. I am very excited to see how this study turns out. A second CCNIA meeting was held in Boston in March 2009 and more projects are being developed. Our very own Heather Clare and Darlene Hanson are consulting on the UCLA study and also developing another possible project with Nilajian Sarkar, a robotics neuroscientist and engineer at Vanderbilt University and Stewart Mostofsky, a neurologist at Kennedy Krieger whose research focuses on motor disturbances in autism.

​I also wanted to update you on our website – Stephan and I have been working all year on the re-vamp of the site and it is looking terriffic! I think you will love it when it’s done. We are in the final stretches now, it’s taken quite a while because I can only devote one day a week to it and that’s when I am in town. The Descartes Institute Board of Directors is meeting in May and will get a sneak peek at it.

​On a personal note, Jon’s movie, ‘Ghosts of Girlfriends Past’, is coming out May 1st and we are all thrilled! His parents are flying in for the premiere on April 27th and Dov and the kids and I will attend with Dov staying as long as he can last as always.

​Best wishes to all of you! -Portia

Posted on 04/16/2009 at 01:17:41

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