Cognitive problems 3

Those of you who have been following my ramblings for a while know, this topic is one of my hobby horses. The lack of certainty of proper research findings frustrates me and the careless way of some authors really annoys me...
I just got a fail and really bad criticism about my academic writing skills last week, but even I would know not to say things like "10-50 % may have mild/moderate cognitive problems/learning difficulties"... OK, rant over.
I had 2 specific questions to Dr Pauli about this subject during our visit in October this year. He has one of the largest HCH patient base and I know that he has a few patients with moderate intellectual problems.

1. Have you had any patients with mild/moderate cognitive problems who did not have epilepsy which is almost always linked with temporal lobe dysgenesis. - He took a second to think through his patients and discussed with Peggy and then said no, all of them had seizures. Of course not all kids with HCH and  seizures have cognitive/learning problems, that is clear.
To be honest this was exactly the answer I expected as this has been my finding talking to dozens of families over the last year and a half. Of course we don't have any research on this, so hence I asked my second question.

2. Has there been any progress about trying to get a hold of the data held but not analyzed by big pharma of about 300+ HCH patients, read more here. And apparently yes... if I understood correctly, the main skeletal dysplasia experts met and this topic was identified as a priority and there was a person named to head the research up. I think someone at Cedar Sinai. I think she was going on maternity leave. Anyway, this is great news and it is certainly something I will keep asking and posting about.