![](/images/issue/2007/apr15/4_ALSjamie_7.jpg)
James Heywood in the upcoming
PBS Frontline documentary So Much So Fast |
When James Heywood found out his
kid brother Stephen had amyotrophic lateral sclerosis
(ALS), his reaction was just what you'd expect: despair,
anger, helplessness.
But after James dug a little deeper
and found out that ALS more commonly known as
Lou Gehrig's disease gets relatively little attention
from the medical research community, he added outraged
to the list. He quickly decided he could do better.
"I knew nothing about ALS before Steve was diagnosed,"
he admits. Heck, he hadn't even seen the famous Lou
Gehrig story, The Pride of the Yankees, starring
Gary Cooper. But the MIT-educated engineer with only
a smattering of medical knowledge was convinced that
the research establishment wasn't going to do much for
this orphan disease a condition where outcomes
have improved little since the days of baseball great
"Iron Horse" Gehrig.
James quit his job as a mechanical
engineer and set up the "guerilla research" ALS Therapy
Development Foundation (www.als.net)
to speed up the search for better treatments. Driven
by his brother's decline, he wanted to try things that
would give hope to living patients like testing
combinations of drugs that were approved for use in
other illnesses and rapidly publishing study data on
the internet . His basement initially served as the
lab and headquarters. Today, the Foundation has a budget
of $12 million US and a staff of 35 including some very
eminent medical minds and has earned praise worldwide
for its innovative murine studies. And now the story
of James and Stephen Heywood and their family's quest
for an ALS cure is the subject of a riveting documentary
called So Much So Fast which will air on the PBS programme
Frontline on 3 April at 9PM EST (it can also
be viewed on Frontline's website after the broadcast).
AN
AGE OF UNREASON
"A reasonable man adapts himself to suit his environment.
An unreasonable man persists in attempting to adapt
his environment to suit himself. Therefore, all progress
depends on the unreasonable man." The famous George
Bernard Shaw syllogism is a favourite of James's.
"I was definitely unreasonable,"
he admits now. "I think I was probably unfair in the
beginning thinking that the research field didn't recognize
the problem very well. However, without that unfair
characterization I probably wouldn't have gone so far."
![](/images/issue/2007/apr15/4_ALSstephen_7.jpg)
Stephen Heywood courageously
battled ALS |
A
FALLEN WARRIOR
Tragically, Stephen Heywood passed away in November
after his respirator failed. His widow Wendy, who works
at the Applied Physiology lab at Harvard, says the Foundation
proved to be an enormous support both therapeutic
and moral while he was alive. "We really went
to Jamie and listened to things that were going on at
the Foundation, it involved testing things that were
already on the market the way drugs interacted
with each other," she says. "For us it was an amazing
relief to have this place that was testing all this
stuff and we trusted them. They were amazing scientists
and hardworking people. Thanks to them, any move we
made I felt totally safe with."
"I think it was a wonderful thing.
It was very empowering for all of us a great
idea," she recalls. "Nobody knew where it would go but
we knew we were going in a positive direction. This
is not a family that sits down." Stephen Heywood did,
by necessity, sit down but only in his heavily
tricked-out wheelchair. So Much So Fast showcases
some of the amazing devices he and his brother dreamed
up to maximize his mobility and communication. "It's
a sad thing to me that most of the devices for the handicapped
today are very badly engineered and don't serve needs
very well," says James. "Stephen had a quality of life
that literally no-one at his level of incapacitation
had ever."
ALS & alternative therapies
Desperate patients will try
a lot of crazy things and ALS's poor prognosis
definitely breeds desperation, which is why James
Heywood's foundation has also undertaken to test
alternative therapies. Physicians with ALS patients
who are trying alternative therapies are encouraged
to contact Dr John McCarty, PhD, ([email protected]
or 617-441-7214) at the Foundation. "His job is
to be the full-time Mulder (alluding to the sleuth
on TV's X-Files) of the alternative therapy
world and literally his job description says he's
to know more about everything being used in the
world than anyone else," says James. "Clinicians
often call him for advice. Patients try all kinds
of alternative therapies for ALS and I don't want
people to go to Russia for stem cell transplants
that don't work when we have the data to prevent
that."
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The Heywood family's passionate
quest for an ALS cure could also be trying. "Sure, it
was stressful at moments we used to joke it was
all ALS all the time," recalls Wendy. In fact, that
stress partially led to the breakdown of James's marriage.
Adding to the charged atmosphere was the fact that the
Foundation tended to attract researchers whose families
were also affected by ALS. "It's a double-edged sword
having people with a heavy emotional attachment," says
James. "I can be pretty harsh because I don't believe
good intentions get you very far so I had to ultimately
let go of a couple people who were really connected
to the disease."
THE
FUTURE
Stephen Heywood's death didn't dampen his brother James'
passion for finding a cure for ALS. "What I'm most excited
by now is the fact that I think we're
in a paradigm shift of how research and discovery is
going to be done," he says. "There are a few things
that are coming together right now profiling
technology like gene chips and proteomics combined with
advances in the ability to use the genome more efficiently
mean that there's a moment now where a very small research
team can do things that just weren't possible before."
The medical establishment has been
sceptical of James's project. "What we're criticized
for is not following the traditional academic process
of grants and publication but what we're not criticized
for is the quality or the quantity of work we've produced,"
he says. "I think the reason we're able to operate with
the quality and the efficiency that in ALS is unrivalled
is because we're not following rules that would prevent
us."
In So Much So Fast there's
a scene that nicely illustrates this butting of heads.
At the annual meeting of the Society for Neuroscience,
Jeff Rothstein, a leading ALS researcher, lambastes
him for violating the tenets of peer review, saying
"Okay, you want to be an anarchist, you can." Then the
film cuts to the next day with Dr Rothstein going back
to James to apologize for his kneejerk reaction. "I
really like what you've done with the animals a lot.
It's a really good job and I actually do think it's
better than anything we do," he said.
James points out that he's proud
of the fact the European Clinical Trials Group has just
adopted the Foundation's standards for how mouse studies
are run as a requirement for using the data in trials.
"There was a time where we were the cowboys outside
the rules a bit and all of a sudden we're the gold standard,"
he says. "You could blink and miss it."
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