I might make some comments on these movie notes after I’ve taken my big Language Development exam on Tuesday.
1993:
-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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Catty Remarks