Saturday, 23 July 2011

Wading through a stack of scientific papers. "What would Lars say?"

I should have done this in a meticulous detailed way not months, but years, even a decade ago. As ever I have left everything until a few weeks after the last minute and I sit on a train to Devon elbow deep in genetic and behavioural development research papers trying to learn as much as possible about Fragile X in a day.

A minor (ok, medium to major) creative and ethical division is our latest elephant in the room. There is yet another difference between the boys (the boys being the two MEN who directed the film, James Moore and William Spicer - yes, the latter is some relation) and me (me being a sort of producer come executive producer come lumpen prole fundraiser and self-effacing emo philips monkey in front of the camera gimp).

What is this conflict all about?

I wonder if we can't layer some more sciencey science into the film, something that explains the effect of having a fragile x chromosome on my brother Tom more explicitly?

The boys think that the film needs to be a rolling tale, an emotional journey, and that just having this intense portrait of Tom and his siblings ranging outside of our collective comfort zones, is asking enough of what is a simple and emotional story.

I agree with them, and I have seen documentaries with too many cute devices that muddy the simpler and more important tale. In a gay way, documentary of this sort is a bit like style and architecture. Less is more.

I figure the cure for this little dilemma is to read, loads. Sleep on it. Write some lists. Watch the film. And then talk to James at the Wellcome Institute (who have given us a bit of a grant for the film, rather pleasingly) on Monday. Thankfully, William is away. While the bitter and simmering differences between us have gone, they are easily dredged up the minute we have disagreements. Kids and animals, pah. try working with younger brothers.

Will call Tom and ask him what he thinks, fairly sure he will says, "Er," thinking pause, "Dunno. What would Lars say?"

Okelly doke. Thanks for listening.

PS. Below is some information about Fragile X Syndrome, from release issued by lab developing treatments. Should add, Tom hates taking pills, and (aside from a short period requiring a whole other post) never has taken them - except for imaginary hangovers.

Fragile X Syndrome is the most common inherited form of mental impairment and
the most common known cause of autism. Fragile X Syndrome is caused by a
mutation of a single gene, the Fragile X mental retardation 1 (FMR1) gene, on
the X chromosome. The FMR1 gene produces a protein needed for normal brain
development. Individuals with Fragile X Syndrome lack this protein and, as a
result, exhibit a number of behavioral and physical symptoms including mental
and developmental impairment to varying degrees, attention deficit and
hyperactivity, autistic behaviors, anxiety, large physical attributes,
particularly of the face, and seizures. Fragile X Syndrome typically impacts
boys more severely than girls, with 20% of boys also receiving a diagnosis of
autism. There is no cure for Fragile X Syndrome at this time. A variety of
medications and behavioral interventions are used in an attempt to address
individual symptoms of the disease. Drugs currently used primarily focus on
treating specific symptoms such as anxiety, or improving and controlling