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» LymeNet Flash » Questions and Discussion » Medical Questions » Howard Hughes Institute, 60 Minutes

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Author Topic: Howard Hughes Institute, 60 Minutes
Lymelighter
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This looked fascinating. We should write Tom Cech urging him to consider funding the Columbia Lyme Disease Center/Brian Fallon/Greenwich Lyme Organization, LDA, etc. & Lyme research, in general.

Needless to say, the competition for research $ for medical research is fierce. Unless Lyme becomes a near & dear cause to a BIG Celeb, Politician, or multi-zillionaire, it will not gain the research $ needed.

If your LLMD is involved in research, please pass this info on to them so they can apply for a grant. This is very important!

Howard Hughes: Patron Of Science?
July 18, 2004

Howard Hughes was once the richest man in the world. He was also one of the
strangest -- a complete recluse for the last 20 years of his life.

For people of a certain age, the name Howard Hughes conjures up a host of
images: daring pilot, Hollywood playboy, and head of a business empire.

Hughes died more than a quarter-century ago, but as Correspondent Lesley
Stahl first reported last year, his vast fortune is still making a powerful
impact on the world.
--------------------------------------------------------------------------------
In suburban Washington, D.C., hidden behind trees so big and signs so small
that even some neighbors don't know it's there, is the Howard Hughes Medical
Institute, one of the richest and quietest charities ever created.

How large is the endowment? Tom Cech, the institute's president, says it's
$11 billion, making the Hughes Institute the second-largest philanthropy in
the country, behind Bill Gates' foundation.

The institute's mission: to unlock the secrets of life. It funds hundreds of
the best biologists and geneticists in America.

Some of its great discoveries include: the genes responsible for cystic
fibrosis; muscular dystrophy; a non-invasive test for colon cancer; the new
drug that fights leukemia; breakthroughs in AIDS research; work that may
lead to a cure for spinal cord injuries; and much more.

All of these discoveries were made by "Howard Hughes Investigators." There
are 330 in the United States. They're the cream of the scientific crop and
include seven Nobel Prize winners. Tom Cech won his own Nobel Prize for work
on RNA.

How much does Howard Hughes spend a year funding all these projects? "It's
about a million dollars per investigator per year. About $450 million a
year," says Cech. "Who would have thought that the Howard Hughes fortune
would end up supporting biomedical research?"

It's very likely that Hughes didn't mean for all of this to happen. And
that's where the science story gets juicy.

"He was a playboy, he was a world-class pilot. He dated Bette Davis,
Katherine Hepburn, Ginger Rogers, Ava Gardner, Rita Hayworth, in the same
week," says author Richard Hack, who has written two biographies of Hughes.

Hollywood was his playground, but Hughes came to fame as a record-setting
pilot, and it was his Hughes Aircraft Company that turned him into a
billionaire. His most famous plane, the "Spruce Goose," was a giant wooden
seaplane that flew just once, with Hughes at the controls. Despite that
flop, Hughes Aircraft still became one of America's biggest defense
contractors.

"The company originally started to make airplanes and then it maneuvered
itself into guidance systems. So it was a very important element of the Air
Force," says Hack.

But the world's richest man wasn't your average government contractor. He
was combative and he bullied Pentagon officials. A newsreel from 1947 showed
him lambasting a U.S. senator who had the audacity to challenge him.

By 1953, the temperamental Hughes had begun to withdraw from public view.
His own executives at Hughes Aircraft often couldn't reach him, and he cut
off contact with the Air Force.

The Air Force then delivered an ultimatum.

"It was at the Beverly Hills Hotel and the Secretary of the Air Force came
and demanded to see Howard Hughes, who kept him waiting for an hour and a
half," says Hack. "The secretary of the Air Force came in and said, 'You
either put control of this company under somebody that I am going to tell
you to hire, or we are removing every single contract from Hughes Aircraft.'
He gave him 90 days."

What happened next? In exactly 90 days, Hack says Hughes created the Howard
Hughes Medical Institute: "This was one wily move. By giving the new
Institute 100 percent ownership of Hughes Aircraft, Hughes got out from
under the Air Force ultimatum and built a giant tax shelter for the
company's profits."

"Because it was a medical institute, it was all tax-free," adds Hack. "It
was a charity. Even though they did no research. Plus, there were no
personnel, and the only trustee was Howard Hughes."

When the IRS challenged the institute, it did begin to fund some research.
But for many years, as Hughes retreated further into isolation and illness,
more money went to him than to science.

Hughes died without a will in 1976, and the Institute was mired in years of
litigation. Finally, in 1984, a court appointed new trustees, and they
promptly sold Hughes Aircraft to General Motors for $5 billion. Suddenly, an
institute created basically as a sham became the richest charity America had
ever seen.

Hughes gives its investigators freedoms most scientists can only dream of.
For instance, they're free of the crushing paperwork - a 30-page form,
single-spaced - required to get money from the National Institutes of
Health.

"The paperwork for a government grant is sort of like filing out your tax
forms," says Cech. "In contrast, we want to free up people to think about
their science, not think about filling out forms."

Hughes investigator Doug Melton, at Harvard University, is thinking about a
cure for juvenile diabetes. He's working with stem cells from human embryos.

"And I can think, as I do most every waking moment of the day, 'How am I
gonna get those cells to become insulin-producing cells?' And the Hughes
makes that possible," says Melton, who wouldn't have gotten a federal grant
at all for his research.

In 2001, President Bush imposed his stem cell ban, in which he tried to
balance the objections of opponents of abortion against the wishes of
scientists to work with collections of stem cells, called lines.

"He drew this line at saying, 'Well, if someone else has already created
these stem lines, then it's OK for you to use them, but don't create any new
ones,'" says Cech.

But critics say that's morally ambiguous, and that the president is trying
to have it both ways. Is Cech taking a swipe at the president's policy?

"It's either ethical or it's not ethical. We decided that was not a place
that we were comfortable," says Cech. "And we don't think it's unethical.
Therefore, we think that we have not just an opportunity to engage in this
research, but perhaps a responsibility."

Since the president's ban applies only to researchers using federal grants,
Hughes, as a private institution, is free to plow ahead.

Using leftover embryos from a Boston fertility clinic, Melton has, in the
last year, created nearly a dozen entirely new stem cell lines.

"We're trying to figure out how to tell them what to do. In our case, we
want them to become these insulin cells," says Melton.

Hughes' money is also being used to solve all kinds of arcane scientific
puzzles. For instance, Hughes has been funding Dr. Huda Zoghbi's lab at the
Baylor College of Medicine since 1996.

"I'll tell you a very scientific story that would have never happened if not
for Hughes," says Zoghbi, who was interested in really understanding how
balance and coordination are controlled in humans. She had the first go,
looking in fruit flies, then in mice. That took years, and because it wasn't
focused on curing a specific ailment, nobody else was likely to pay for it.

"That really has nothing to do with disease. It's far out from disease, and
hardly anybody - when we started this study in 1995 - would be attracted to
funding something relevant to a fruit fly to study in a mouse and in a
human," says Zoghbi.

"So we found the gene and it turned out to be a very important gene. It
turned out to be the gene that's essential for the little hair cells in the
inner ear that allow you to hear and allow you to know where your head
position is when you close your eyes. We would have never known how
important it is and know nothing about it, if not for funding from Hughes
and that, I think, has paid off in a big way."

Hughes also allows its scientists to change course. When Melton first got
funding 10 years ago, he was studying the development of frogs. Then, his
infant son was diagnosed with juvenile diabetes.

"I stopped working on frogs and asked my colleagues to join me in working on
the problem of how to make cells that are absent in juvenile diabetics,"
says Melton. "The Howard Hughes Medical Institute was perfectly fine with
that. I told them what I was gonna do. They said, 'Sounds interesting to us.
Go for it.'"

Melton believes that the NIH would not have been as accommodating. And now,
Melton has since become one of the leading diabetes and stem cell
researchers in the world. Unfortunately, his daughter contracted diabetes
last year, so Melton says he is very committed to trying to solve this
problem.

Is the Hughes Institute encouraging investigators to take risks?

Cech says yes: "To take risks in the sense, not just of doing something that
has a low probability of succeeding, but in terms of thinking about the big
problems, such as, you know, 'How does memory work?' and, 'How does the
brain accomplish decision-making.'"

"It'd be wrong to pretend that I was in any way like Galileo. But it is true
that the Medici Family supported investigators like Galileo, to allow them
the freedom to explore things which they couldn't otherwise do," says
Melton. "And that's how I like to think of the Howard Hughes Medical
Institute. It allows us the freedom to explore things that we wouldn't
otherwise do."

As the Institute supports more and more explorations like Melton's, history
may begin to remember Howard Hughes differently, not just as a bizarre
billionaire, or just as a pilot and a playboy, but as a great, if
accidental, patron of science.

A few months ago, Doug Melton formally published 17 new stem cell lines
created in his Hughes-funded lab. He's now making them available for use by
other medical researchers.

And through financial management that would make its founder proud, the
Hughes Institute's endowment is now up over $12 billion dollars.


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RECIPEGIRL
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Hi,

This piece about HHMI was fascinating!

What's even more awe-inspiring is the idea to secure additional funding for the Columbia Lyme Research group from HHMI.

How could HHMI not be interested in Lyme when Howard Hughes died of syphillis.

Wow------even the very rich go undiagnosed. And to think, penicillin is so cheap.
Take Care,
Jan


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ConnieMc
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I seemed to get the impression that the individual "investigators" have a great deal of choice in what they work on. Bascially, they are just "brains" given full reign on their research, withough having to worry about red tape, grant applications, etc. Part of the story said one of the researchers changed his entire project to diabetes when his child was diagnosed with it. Because, that's what HE wanted to work on. So, wondering how you go about "influencing" an "investigator"? Food for thought, anyway. Wonder if there is a mechanism by which the public can present ideas?

Quote from story: Hughes also allows its scientists to change course. When Melton first got funding 10 years ago, he was studying the development of frogs. Then, his infant son was diagnosed with juvenile diabetes.

[This message has been edited by ConnieMc (edited 19 July 2004).]


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Lymelighter
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"Wonder if there is a mechanism by which the public can present ideas?"

Connie, a Return Request Receipt letter to Tom Cech is a great way to find out...

I'm going to fwd this to a LLMD who does research to see if he'd send a proposal.


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lou
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This same segment has aired before, and both times I sat there wondering if our best hope is for one of the foundation officials to get chronic Lyme! Doesn't look like the government is ever going to use our tax dollars for anything that helps chronic Lyme cases.
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sofy
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#1 Is this THE place to ask for funds to go to?

#2 Anyone have an address for Tom Cech so we can send letters.

#3 Any specific info we should include in our letters to get more attention

Im new to this stuff and dont have much good cognitive ability so forgive if the ?? seems stupid.


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Lymelighter
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http://www.hhmi.org/contact/

They're giving grants for infectious disease research...
http://www.hhmi.org/grants/individuals/idap.html

[This message has been edited by Lymelighter (edited 19 July 2004).]


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lou
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I think requests for funding have to come from the researchers themselves. Also, I would hate to have this organization take up Lyme disease and fund Steerites instead!
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