[Music]
als is a devastating disease and it's
always fatal the initial symptoms are
very subtle you may have trouble
buttoning your shirt or grasping a pen
to write a letter or occasionally
stumbling while you're walking
unfortunately these symptoms progress
very rapidly as the neurons that
generate that control movement die
eventually you become paralyzed and
unable to speak or swallow or breathe
most ALS patients die within 3 to 5
years and there is no cure this is Pete
Freddie's before he developed ALS and
this is Pete Freitas shortly before he
passed away now receiving the news that
you've been diagnosed with ALS would be
traumatic to anyone but Pete was special
when Pete received his diagnosis he said
I'm gonna do something about it
so he gathered his family together and
he said to them what an amazing
opportunity that we have here to change
the world I am going to change the face
of this unacceptable situation in ALS so
what did B do let's take a look
Pete was the man who inspired millions
upon millions of people to do the ice
bucket challenge and although he didn't
invent the ice bucket challenge both he
and the entire Freitas family were
relentless in ensuring its success the
concept was simple get a bucket of ice
water pour it on your head and challenge
three your friends to do the same then
post your video to the Internet and hope
that will generate awareness for the
disease and hopefully raise
contributions towards ALS research I'm
very glad you enjoyed that video
I literally have watched hundreds of
those videos and I will tell you that by
far Kermit the Frog doing the ice bucket
challenge is my favorite
in 2014 the summer of 2014 the ice
bucket challenge went viral and exploded
like nothing the world has ever seen
everyone was doing the ice bucket
challenge
politicians rock stars celebrities frogs
everyone in fact I would imagine that
several in the audience have done the
ice bucket challenge raise your hand if
you if you've done the ice bucket
challenge before that's amazing I knew
people that come to TED talks were smart
but I didn't realize how generous they
are the ice bucket challenge had two
major goals the first was to rate raise
public awareness for the disease over
440 million people have done the ice
bucket challenge that number alone I
think says it was indeed a success of
those 17 million posts their videos to
the Internet and that resulted in over
fifty billion views 50 billion views
that's more than twice the combined
number of people that have watched all
53 Super Bowls I can tell you personally
this increase in public awareness
definitely changed my life before the
ice bucket challenge when someone asked
me what I did for a living I say I do
research on ALS I would usually give you
a blank look and I would try again
I said well ALS is actually a lousy name
for the disease in many countries they
call it motor neuron disease motor
neurons are actually the type of
that died within these patients again
still get that same blank look then I
would say you know what I got it Lou
Gehrig's disease Lou Gehrig the Hall of
Fame New York Yankee the Iron Horse he
played in over 2000 consecutive games
and unfortunately died of ALS
now that gave me a response usually it
was a dirty look
and the person saying to me John we're
in Boston
we do not discuss the Yankees here since
the ice bucket challenge I have not met
a single person who has not at least
aware of ALS the second goal of the ice
bucket challenge was to raise 220
million dollars for research and that
includes a hundred and fifteen million
dollars that was donated to the ALS
Association the largest charity for ALS
in the United States this obviously had
a dramatic effect on scientific
researchers including myself in fact in
the months prior to the ice bucket
challenge I applied for a grant from the
ALS Association which was based on
studying the genetics of this disease
they came back to me and said John we
love your proposal we think it's
incredible unfortunately we do not have
the funds for you to carry out this
project
after the ice bucket challenge the ALS
Association called me back and they said
now we have the funds for you to carry
out your project just two years after
receiving that funding we identified a
novel gene called neck one which is one
of the most commonly mutated genes in
ALS our gene discovery received a large
amount of press coverage to be honest
though as scientists the press coverage
is not what really drive us what drives
us is the discovery itself the question
it answers and the satisfaction that we
are one step closer to identifying care
I will omit though there were two
instances where the press coverage did
give me a little bit of a thrill the
first was when I saw that the gene we
just discovered neck one appeared as the
basis of a question on Jeopardy
so I have to pause for a second this is
freakin cool alright I so so
now as many of you are aware because you
are actually attending a TED talk it is
every geeks dream to be the basis of a
question on Jeopardy and yes I am a
self-proclaimed geek the second event
occurred when I was asked to do an air
view on PBS on our gene discovery with
Andrew Frey T's Pete Freddie's brother
this was the first time that I had met
Andrew and we were talking extensively
backstage then all of a sudden Andrew
stopped he looked at me he says John
there's something I have to tell you
Pete and I and the rest of us were just
giddy when we heard your name as the
scientist who made this discovery
obviously I was a little bit puzzled by
this and I said well well well why and
Andrew said well you know how every
person has a porn star name that you can
generate by taking your middle name and
combining it with the street that you
live on so yeah well Pete's middle name
is John and we grew up on Landers way
so so you John Landers our Pete
Freddie's porn star name III really
didn't know how to react to that other
other than they say thank you I'm
honored
so one connection that Pete and I will
always have is that I am Pete Freddie's
porn star named through the ice bucket
challenge we've been able to continue
our research in ALS genetics but our
most recent project is the one that
frankly I am most excited by over the
past several years the genomes of
thousands upon thousands upon thousands
of ALS patients have been collected this
is an enormous amount of data and we're
not exactly sure how to analyze it in
fact we estimate that this represents
about 70 trillion data points just to
put this in perspective if you were to
count the human hairs on every single
person in the entire world it would come
out to be very close to that number so
how we're going to analyze it well we
thought about this for a while and we
said well maybe the world can do it for
us so just like the how the ice bucket
challenge crowdsource
raising funds for ALS research and
increasing awareness what we intend to
do is to crowdsource the
world's collective intellect to help us
analyze this data so towards this end we
are collecting all of this data we're
putting it up in the cloud and our plan
is to give it open access to the world
population so what this means is that
whether you're a high school teacher an
engineer a computer programmer or just
someone who likes to solve puzzles you
could be making the next great discovery
in ALS genetics in fact we even are
planning on offering prizes to those who
come up with the most innovative ideas
to analyze this data up to this point
I've discussed how the ALS ice bucket
challenge has affected my own research
and me personally but I'm just one
researcher in the ALS ice bucket
challenge goes well well well beyond me
it has had an amazing impact on the
scientific community as a result of the
ice bucket challenge the ALS Association
has been able to triple their research
budget and over the last five years have
given out over 300 grants for ALS
research and
as a result of this we now have six
times as many funded researchers working
towards that cure it's been just five
years since the first ice bucket
challenge and I literally could stand up
here for hours upon hours upon hours
talking in excruciating detail and all
of the scientific achievements I have
occurred over this time frame would
anyone like me to do that anyone anyway
Euler Euler no one okay so have we
identified a cure for ALS yet no not yet
but are we a whole lot closer now than
we would have been without the ice
bucket challenge you bet we are and we
are not done yet I would just like to
end my presentation to say on behalf of
all of the ALS patients their families
and the research scientists who have
just benefitted from the ice bucket
challenge thank you
[Applause]
[Music]