So Much So Fast–An ALS Film

11 Nov

I might make some comments on these movie notes after I’ve taken my big Language Development exam on Tuesday.


-destroys nerves then muscles

-most ppl die in 2-5 years.

-no txmt, no sx, no drug back then

-the Haywoods were well-off, beautiful, and never knew trouble

-called orphan dz

-a few thousand ppl have it, but it isn’t enough for drug co to research a txmt/cure

-Steven diagnosed with ALS @29 y.o.

-Jamie, his bro quit his job to start ALS research foundation.

-Jaime’s head is up in the clouds

-1st attempt was gene therapy–didn’t work.

-ppl with ALS have very little time.

-power wheelchair $26,000 and delivery in 5 months.

-R hand weakness was the start of dz

-Jaime and Melinda’s daughter Zoe.

-drugs, gene therapy, antibody therapy.

-mouse lab heart of program–>test drugs approved for other diseases to get them to P faster.

-interactions a real possibility.

-balance hope and reality.

-foundation is outside the norm.  Jaime claims he will find a solution faster then established sci.

-Jaime can SELL the science, but understands little about it–no bio background.

-30,000 scientists at neuroscience conference.

-P want neuroscientists to try things on ppl, not just mice/rats.

-after 9 month, Steven couldn’t lift Alex

-Motor neuron dz

-10% ALS P have genetic form that can be inherited.

-in 90 days, rodents can’t walk, in 4-5 months they die.

-P going to foreign countries/black market to obtain drugs faster.

-Jaime wants to be the center of the foundation.

-speech slurred as tongue muscles weaken.

-experiment on terminal P.

-drug of the month problem.

-some drugs have promise, bur then help little, and may hurt.

-mice expensive, hard to get, and take 6 months to try something out on.

-Dapsone–delay of onset symptoms in rats.

-sex is awkward b/c Steven needs a person helping him.

-Discovery kept secret to protect patents, profits, publishing rights.

-Putting info online makes it widely and quickly available to anyone–but isn’t peer reviewed.

-go directly for drug, skipping theoretical parts.

-1995 1st ALS drug approved, Rilutec–extends life about 3 months.

-$400,000 for 1st year, 4x that 2nd year, 4 mil.

-t588 has some promise for ALS.

-depression is a key factor

-Jaime didn’t listen–2 big donors gave 1/2 mil and he lost it.

-relatives feel they can’t be grumpy.  Ever.

-ALS P seem to love talking/driving.

-is there a correlation between attitude and dz progression?

-sphincter control of wheel chair.

-naive to start a foundation to save the forgotten.

-Melinda left Jaime after 10 years of marriage.

-As abilities reduce, expectations decrease too.

-Dr. Kavorkian helped ALS P.

-Kids, family, technology make ppl want to live.

-$45,000 every other week for foundation’s payroll.

-can only pay minimum wage ($270/wk).

-push ppl til they break for foundation work.

-the film is over 4 years.

-foundation convinced drug co to dev. things for ALS.

-eventual decision is respirator.

-July 2004 Ben gets married

-Nov 2006, Steven’s respirator accidently detached in the night and he died.

-Braingate is a technology he helped pioneer that controls computer w/thoughts.

-100,000 electrodes implanted in brain.

-P thinks about moving and it moves the computer.

-foundation is now ALS Therapy Dev Institute and is expanding its research.

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