AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER    
Friday, November 30, 2001 

INDEX:
*  
60 Minutes II: Holy Grail
*  Stem-Cell Transplant Saves Teen's Life
*  Cells Came Friom Umbilical Cord, Not Embryo
*  Many Parents Now Banking Umbilical Cord Blood
*  PICTURES REVEAL HOW NERVE CELLS FORM CONNECTIONS TO STORE
    SHORT- AND LONG-TERM MEMORIES IN BRAIN V
* UF and VA awarded patent for seizure-prediction technique
*  Inaugural Meeting
*  ALERT! Elementary & Secondary Education Act Conferees to Vote
   on IDEA Full Funding Friday
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60 Minutes II: Holy Grail
*  Stem-Cell Transplant Saves Teen's Life
*  Cells Came Friom Umbilical Cord, Not Embryo
*  Many Parents Now Banking Umbilical Cord Blood

Nov. 28, 2001
CBS

Keone Penn was cured by a stem cell treatment.

(CBS) Stem cells are thought of as the Holy Grail of medicine. One young boy
agrees with that. He made medical history because he's been cured of his
life-threatening disease. The key to his cure did not come from a human
embryo, where all the controversy is, but from something that is routinely
toss in the garbage - an umbilical cord. Umbilical cords were always
considered medical waste. Not anymore. Correspondent Carol Marin reports.

That's why new parents like Pam Dorne and Stephen Ayers of suburban Chicago
have decided to save their children's umbilical cord blood. Dorne gave birth
last spring to a baby boy, Kyle.

After a baby is born, there is just a 15-minute window to retrieve the four
to six ounces of blood in the umbilical cord. And in that blood are
potentially lifesaving stem cells that can be saved for future use.

"This is really where, I think, so much of biomedicine is going to be going
in the 21st century," says Dr. Andrew Yeager of the University of
Pittsburgh.

For instance, when stem cells from umbilical cord blood are injected into a
person's vein, they migrate to the bone marrow and can create what Dr.
Yeager calls a blood factory, replacing diseased blood with healthy blood.
According to the National Institutes of Health, stem cells may one day be
able repair the body's tissue and muscle and cure everything from spinal
cord injuries to Alzheimer's.

"It's not just pie-in-the-sky speculation," says Yeager. "There are studies
that would suggest that other organ dysfunction - nerve damage, heart
damage, brain-cell damage - might actually be fixed."

It has the potential to make paralyzed patients walk and make Alzheimer's
sufferers remember.

That potential is what Dr. Yeager was counting on to cure a young patient
named Keone Penn.

Keone suffers from a case of sickle cell, a painful genetic blood disease.
He was diagnosed when he was 6 months old. He was 5 when his sickle cell
caused a stroke.

"All I remember is I woke up and my mama was beside me and there was a
basket beside me and a teddy bear," he says. "It was very scary, I mean,
whew."

For six years, Keone and his mother, Leslie Penn, were constantly in and out
of an Atlanta hospital to receive transfusions to stave off another
potentially deadly stroke. By the time Keone was 11, the transfusions were
becoming less effective and he had excruciating pain in his joints and lower
back.

"The pain is usually so intense that even morphine, Demerol, those
heavy-duty medicines don't really touch it," Leslie Penn says. "All you can
really do is pray that he'll just go to sleep."

Keone says he's tough, but at 15, he looks much younger. Sickle cell stunted
his growth - he's just 4 feet, 9 inches, tall - and restricted what he could
do.

"I was impaired from doing a lot of things that normal kids do, like sports
or anything or run," he says. "Couldn't play basketball. Because, you know,
some people like roughhousing when they play basketball and they can knock
you over and push you and that could really hurt me."

The odds were that Keone had, at best, only five years to live. So Yeager
decided to take a chance on a new procedure. Never before had stem cells
from umbilical cord blood been used to treat sickle cell.

"The goal here is that these stem cells, which are in a relatively high
proportion in cord blood - higher than they would be in our own bone marrow
and definitely higher than in our own circulating blood - could then be
injected and would take hold and again, make more of themselves. And make a
whole new blood factory."

Yeager told the family he wasn't sure the procedure would work.

"He just basically said, 'This is just a 50-50 chance and it's up to you all
if you want to do it, I can't offer you any guarantees.'" recalls Leslie
Penn.

Keone Penn remembers how his mother told him: "She came in the room looking
very depressed. Pulled the chair up sat beside me in the bed and told me
everything. And I almost started to cry. But she was very calm about it. She
told me everything, said, 'You got-you may - have five years to live,' you
know."

Ordinarily, patients with a severe case of sickle cell, like Keone's, would
have had a bone-marrow transplant.That's because until recently bone marrow
was the only source for stem cells.

But bone marrow transplants can be tricky because there must be a precise
match between the person donating the bone marrow and the patient receiving
it. In Keone's case, no match could be found.

Stem cells from umbilical cord blood don't need an exact match.

Dr. Yeager and his team found a match that was close enough in a cryogenic
tank at the New York Public Blood Bank, which since 1992 has slowly been
collecting donations of umbilical cord blood.

Over Christmas vacation of 1998, after intensive chemotherapy to destroy
Keone's bad blood, he was injected with the stem cells.

After a few weeks, something extraordinary happened - the stem cells changed
his entire blood system from type O to type B.

"That concept there is the one that really blows my mind," says Leslie Penn.
"The thought that your whole blood type is changed. The umbilical cord
cell's donor, he took on their blood type.

A year later, doctors declared that the sickle cells in Keone's body had
disappeared. Today, he is considered cured.

It was umbilical cord stem cells that cured Keone, not stem cells from human
embryos. While the use of embryonic stem cells has generated fierce
controversy, umbilical cord stem cells have attracted little attention and
no political debate. And now it seems, more and more new parents have
decided to bank their hopes on the stem cells in their newborn's cord blood.


Moments after Pam Dorne gave birth to a baby Kyle, his cord blood was
sealed, packed in dry ice, and given to a courier. Within hours, the package
was on a plane bound for Tucson, Arizona, where the largest privately run
cord blood bank in the country is located.

There, a child's umbilical-cord blood is stored in a cryogenic tank at a
temperature of minus 400 degrees Fahrenheit.

Dr. David Harris, laboratory director of the Cord Blood Registry, says it
takes only a small vial of cord blood to change a person's entire system.

So far, Cord Blood Registry has collected about 30,000 samples from families
willing to pay a $1,300 flat fee and $95 a year to analyze and privately
store their baby's cord blood. The company has taken in over $40 million so
far, selling a kind of biological insurance.

"Part of the issue when people bank," says Harris, "it is because they have
a family history or they work or live in a place where there is a potential
for cancer. But part of it is for peace of mind."

According to the American Academy of Pediatrics, that peace of mind isn't
worth the money. The academy says the chances a family will ever need to use
its frozen cord blood are very small. What they say makes more sense is to
donate cord blood to a public bank, the kind where Keone Penn got his stem
cells.

That is something Pam Dorne, an obstetrician, says she understands in her
professional life. But her own personal choice was a private bank, she says,
for one reason.

"If the American Academy of Pediatrics could tell me that none of my
children would ever have a problem," she says. "or that if they had a
problem, I would be guaranteed that there would be enough donors and
somebody would match them, that would be perfectly reasonable. But I don't
think anybody has that crystal ball."

What saved Keone Penn's life, Dr. Yeager says, is a public blood bank and
the umbilical cord blood from an anonymous donor.

"If they wish to pay, that's absolutely fine." He says of patients. "But to
look at a larger, greatest good for greatest number, I would contend that a
volunteer donation to a public blood bank would make the most sense."

Meanwhile, Keone, a pioneer, is doing things he's never done before.

"I discovered the other day that I like playing basketball, " Keone says. "I
never played basketball, 'cause I've always been disabled to play it and to
have fun."

Keone, who one day hopes to become a chef, still has some major health
problems as a result of infections that occur in most stem-cell transplants.
Because of steroids and other medication, he has arthritis, walks with a
limp and will need joint replacement in his hips and knee. But the good news
is the sickle cell that was killing him is gone.

"I love stem cells," he says. "I mean they saved my life. If it weren't for
them I wouldn't, you never know, I probably wouldn't be here today."

Keone doesn't know where the cord blood came from or who is the owner. He
says he would like to know, just so he could say, "Thank You."


(c)MMI, CBS Worldwide Inc. All Rights Reserved
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PICTURES REVEAL HOW NERVE CELLS FORM CONNECTIONS TO STORE SHORT- AND LONG-TERM MEMORIES IN BRAIN







EMBARGOED BY CELL
UNTIL NOV. 29, 2001 9 a.m. Pacific Time (noon ET)Media Contact: Kim McDonald (858) 534-7572
Comment: Michael Colicos (858) 822-1246 or Yukiko Goda (858) 822-1244
Photograph and Video Credit: Michael A. Colicos, UCSD

PICTURES REVEAL HOW NERVE CELLS FORM CONNECTIONS TO STORE SHORT- AND LONG-TERM MEMORIES IN BRAIN V

IDEO

Photoconductive stimulation of neurons on silicon under microscope
Video requires REALPLAYER
Scientists at the University of California, San Diego have produced dramatic images of brain cells forming temporary and permanent connections in response to various stimuli, illustrating for the first time the structural changes between neurons in the brain that, many scientists have long believed, take place when we store short-term and long-term memories.In a paper published in the November 30 issue of the journal Cell, researchers from UCSD's Divisions of Biology and Physical Sciences describe their achievement, a "Holy Grail" for neuroscientists who have long sought concrete evidence for how nerve connections in the brain are changed temporarily and permanently by our experiences."The long-term memories stored in our brain last our entire lives, so everybody had assumed that there must be lasting structural changes between neurons in the brain," says Michael A. Colicos, a postdoctoral fellow at UCSD and the lead author of the paper. "Although there's been a lot of suggestive evidence to indicate that this is the case, it's never before been directly observed.""While most people assumed that some sort of rearrangement of nerve cell connections took place in the brain, this was extremely difficult to demonstrate experimentally," says Yukiko Goda, a professor of biology at UCSD who headed the research team, which included Michael J. Sailor, a professor of chemistry and biochemistry at UCSD, and Boyce E. Collins, a postdoctoral fellow in Sailor's lab. "Some investigators saw increases in the number of synapses in the brain in response to stimuli, while others saw no changes. There are a billion synapses in a cubic centimeter of brain tissue, so no one could tell for certain whether the statistical comparisons of synapse density between one sample and another showed a real increase."To resolve this problem, the UCSD researchers focused their attention on individual nerve cells, specifically neurons from the hippocampus -- the portion of the human brain crucial to forming particular types of memory -- and filmed them as their synapses made new connections to other nerve cells in response to electrical impulses. The ability of the scientists to do this without impairing the normal physiological functions of the cells depended on two new techniques implemented in Goda's lab to study synaptic connections. One was a method of visualizing the rods and filaments of actin -- the girders that make up the cytoskeleton, the internal skeleton of the cell. Using molecular biology techniques, fluorescent versions of actin were constructed and visualized as the neurons grew and changed shape to establish new connections. VIDEO

Nerve cell firing, illustrated by calcium oscillations, in response to photoconductive stimulation
Video requires REALPLAYER
The second development, which resulted from a collaboration between Goda and Sailor, was a method of stimulating nerve cells in a manner that mimicked their stimulation in the brain. This involved using the "photoconductive" properties of silicon in a way that allowed the researchers to deliver a short, high frequency burst of electricity to a specific area of a neuron on a silicon chip by simply shining light on that area. Light excitation in that area of the silicon created a narrow pathway through which Colicos and his colleagues could apply a tiny voltage below the chip to target the neuron. "We stimulate these cells with a short, high-frequency burst," says Colicos, working in Goda's lab. "That type of stimulation is what other researchers believed for many years was the type that formed these connections between neurons."A key advantage of this method is that it doesn't damage the cell. "Part of the reason people haven't been able to demonstrate this before is that the technology hasn't been available to do this before," says Colicos. "The standard way of stimulating a neuron is to use an electrode. But as soon as you stab the cell with an electrode, it begins to die. So the advantage of this new technique is that we can keep the cells in their physiologically normal state. And when we stimulate the cells of our choice by shining light, we can induce the actual structural changes that occur in the brain -- the formation of these new synapses." VIDEO

Increases in actin within synapse of nerve cell that will form new connections with another nerve cell
Video requires REALPLAYER
In their experiments, the UCSD researchers discovered that when they stimulated a cell once, the actin inside the cell was activated and temporarily moved toward neurons to which they were connected. The activity in the first cell also stimulated the movement of actin in neighboring neurons, which moved away from the activated cell. Those changes in the cells were temporary, however, lasting for about three to five minutes and disappearing within five to 10 minutes. "The short-term changes are just part of the normal way the nerve cells talk to each other," says Colicos. "The long-term changes in the neurons occur only after the neurons are stimulated four times over the course of an hour. The synapse will actually split and new synapses will form, producing a permanent change that will presumably last for the rest of your life.""The analogy to human memory is that when you see or hear something once, it might stick in your mind for a few minutes. If it's not important, it fades away and you forget it 10 minutes later. But if you see or hear it again and this keeps happening over the next hour, you are going to remember it for a much longer time. And things that are repeated many times can be remembered for an entire lifetime.""It's like a piano lesson," says Goda. "If you play a musical score over and over again, it becomes ingrained in your memory."In their experiments, which were financed in part by grants from the National Science Foundation and theNational Institutes of Health, the researchers observed no changes in these newly formed nerve connections once they were established, indicating that they were permanent."Once you take an axon and form two new connections,
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UF and VA awarded patent for seizure-prediction technique

By Victoria White

GAINESVILLE, Fla. --- Researchers at the University of Florida and the
Malcom Randall Veterans Affairs Medical Center have been granted a
U.S. patent for a seizure-prediction technique that one day may change
the course of epilepsy treatment.
       With a new five-year, $4.4 million National Institutes of Health
grant, the research team is continuing efforts to refine the system,
which involves analyzing complex electrical activity in the brain to
identify patterns that reveal a seizure is developing-minutes to hours
before it occurs.
         "Basically our idea is to identify a pre-seizure transition phase.
At that point, one could inject a drug, or have a drug released, that
would 'reset' the brain in order to prevent the seizure from happening,"
said J. Chris Sackellares, M.D., a VA neurologist and a UF professor
of neurology, biomedical engineering and neuroscience.
       "Our goal would be to enable people with epilepsy to take less
medicine than they currently do, and to be able to use it only when it's
necessary, rather than having it constantly in their systems," said
Sackellares, who is affiliated with the Evelyn F. and William L.
McKnight Brain Institute of UF. "Down the road, we also may explore
giving the brain a small electrical stimulus to prevent seizures when
they are beginning to form."
       UF is negotiating with companies interested in licensing the
>technology to develop commercial applications. Such products could
include implantable devices that can detect signs a seizure is
approaching and then deliver medication or other type of stimulus to
prevent it.
       The Epilepsy Foundation of America estimates that 2.3 million
people in the United States suffer from seizure disorders, which are
grouped under the common name of epilepsy. In 70 percent of the
cases, there is no known cause; genetic disorders, birth defects, head
trauma, tumors, strokes, infections and poisons are implicated in the
others. Treatment typically consists of medicines, but the drugs can
cause side effects and often do not offer complete prevention of
seizures.
       Sackellares and Leonidas D. Iasemidis, Ph.D., a former VA
research engineer and UF faculty member, began to suspect in 1988
that "chaos" science would be able to shed light on epilepsy. Chaos
theory suggests that through sophisticated mathematical analysis,
patterns sometimes can be observed in events that previously had
appeared to be random.
       Early in the 1990s, Sackellares and Iasemidis, who is now at
Arizona State University, became the first to identify the existence of a
pre-seizure transition period. In the past several years, they have begun
to develop methods to detect the transition anywhere from minutes to
many hours ahead of time. They accomplish this through computer
analysis of the brain's complex electrical signals, which can be
recorded by electroencephalograms, or EEGs.
       With the new grant, a multidisciplinary team of researchers,
including scientists at Arizona State, will seek to improve the accuracy
of the seizure-prediction technique, in part by analyzing additional
measures of electrical activity in the brain and determining which sites
to monitor with electrodes to yield the most significant information
about the potential for seizures. They are conducting the research by
analyzing brain electrical activity in people and in mice.
       "We need to look at the complex patterns involved in the
transition to the pre-seizure state. Like turbulence in the air, this
occurs
in a very complex way, not always in the same place, and not the same
size or length of time, so it's not easy to identify," Sackellares said.
"We're trying to develop more sophisticated time-series analysis
techniques to account for this."
       In addition to Sackellares, other key UF players in the research
effort are Jose Principe, Ph.D., John Harris, Ph.D., and Panos
Pardalos, Ph.D., from the College of Engineering; Paul Carney, M.D.,
Steven Roper, M.D., Johannes van Oostrom, Ph.D., and Richard
Felker, M.D., from the College of Medicine; and Mark Yang, Ph.D.,
From the College of Liberal Arts and Sciences.

brp.mbi.ufl.edu on the Web
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Inaugural Meeting

This meeting is to plan the first WALK F.A.R. NAAR in Buffalo on Wednesday, Dec. 5.  Many people are needed to make this walk a success- I need YOU.

Autism is the third most common developmental disability following mental retardation and cerebral palsy.

As all of you know, little funding is provided for Autism research, even though it is more prevalent than multiple sclerosis, cystic fibrosis yet receives as little as 5% of the research funding as other less common diseases.

Autism currently affects over 400,000 people in the country... including my son, Alexander and many other children and adults in the Western New York area.

Please join me and co-chair, Ken Sull on Wednesday, Dec 5 at 7:00 PM at UB's Amherst Campus - Ketter Hall, Room 140.......... to leave a lasting imprint on Autism in Buffalo!!

If you have any questions, or need more information, feel free to contact me at 522-9185 or email monica@poweradvocates.org

Thank you for being a part of educating the community about Autism and raising funds for Autism research.

God bless YOU
Monica Moshenko
Co-Chair
Buffalo Walk F.A.R. NAAR
716-522-9185

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November 30!! The conferees on the bills to reauthorize the Elementary

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