Web Blog

OK, where do I write to complain about this crap!

Hotwheel@...

Or

MrBill26@...

As many know I've been having a rough time unsnarling my cyber mess.

To all at the MS Community site:

I would normally just read the comments, then back off with some of the email you feel do not belong on this site. We have MS and it does not stop there....we have to fight for services or access into doctor buildings, restaurants and these my friends have to do with the Federal Government.

Did you know that President Bush has tried to appoint Supreme Court Justices who want to rip apart the American with Disabilities Act? We have gained so much and still there is more room for improvement. Can we stand by and see someone destroy what has taken so long to put into action? You cannot put your head in the sand. If you do, you will not be aware of what is going on in Washington when they are destroying your rights according to the ADA. Laws are being passed with little or no provision for the elderly and the handicapped with the Medicare Drug Plan with the high cost of drugs, research or how Medicaid is being downsized because of the economy which many of us are losing our health care and services.

Just be aware of what is going on and if something hits home jump on the bandwagon and fight. I don't saturate the site with a lot of political stuff only information I feel might have an indirect impact on our disease and if we are aware then maybe we can make a difference.

Thanks

Carol [INLINE]

I would welcome your feedback....

Ordinary people believe only in the possible. Extraordinary
people visualize not what is possible or probable, but rather
what is impossible. And by visualizing the impossible, they
begin to see it as possible.
- Cherie Carter-Scott

The article below from NYTimes.com
has been sent to you by jaynemadler@....
I thought this'd be of interest
jaynemadler@...
/--------- E-mail Sponsored by Fox Searchlight

I am always on the lookout for things which minimize effort needed to do
boring things, like housework.
The Roomba Discovery is a terrific robotic vacuum. It works well and is so
small it goes under furniture, beds, etc. It will vacuum up anything a regular
vacuum will and with a small amount of common sense, you can turn it on and
come back later to a well vacuumed room.
It does rugs or hard floors and has a spring load bumper so it won't damage
furniture or walls.
It can tell how long it should run to clean the room.
It can tell if there are steps and will turn around and no fall down them. It
will
not cleans stairs, however.
It also has a remote control if you want to direct it yourself. If you have
fringed
rugs which a regular vacuum catches on, the Roomba will also catch on them,
so for those, the remote control is better to use.
It can easily be used by anyone in a wheelchair.
It has a charger and if you press the buttons, it will return to the charger
itself.
There are no bags, just an easy to empty dirt containter.
It comes with two little things which send out an invisible beam that the
Roomba interprets as a wall and will not cross. These are for rooms with wide
openings and no door.
Roomba is also much quieter than a regular vacuum.
My idea of a good device - watching something (or someone) vacuum a room
beats the heck out of doing it yourself.
There are several varieties of robotic vacuum cleaners, but the Roomba
Discovery (not the original Roomba) is rated far higher than the others.
You can get them at many stores for $149.

Please see the attached link, which shows pricing at $1808 per vial. The drug
is administered once every four weeks. Although there are twelve calendar
months in the year, 52 divided by 4 is thirteen.
Therefore:
13 * 1808 = $23,504 for full year supply
http://www.elan.com/Products/tysabri/pricing.asp
Don't look to me to defend the price. I was hoping that the companies would
price in the $18 to $20 thousand range.
Hopefully, the company will be generous in its financial assistance program
for those who require it.
ElanMike
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#2
Today, 07:07 AM
euphoniaa
Distinguished Community Member

This was failed attempt to list the South Shore Communities Hospital link.
Other attempts will follow.
Jayne

This story was sent to you by: Jayne Adler
Thought this'd be of interest.

Adapted from The Daily Motivator

Sunday, November 28, 2004

Focused, effective action

There are plenty of wishes, plans and intentions. There are many fewer actual desired results. The gulf between intention and accomplishment can be traversed only by focused and effective action. Desire is a starting point, but it is not enough just to want it. Planning is a necessary step, but plans alone will not get you there. Trying is admirable, though just trying won't quite do it.

Accomplishment results from focused, effective action. If you are not getting the results you desire, either you are not taking the necessary action, this action is not focused clearly and consistently enough on the goal you seek or the actions are not effective enough.

There are surely factors which work against you and there are probably things which work in your favor, but they do not change the need for focused, effective action. It is an essential part of any success.

There is a path from here to anywhere. Travel the required path with focused, effective action, and you will achieve whatever you desire.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.

http://greatday.com/

[INLINE]
~Joyce
"I always turn to the sports page first. The sports page records people's accomplishments; the front page nothing but man's failures."
~ Supreme Court Justice Earl Warren

The article below from NYTimes.com
has been sent to you by jaynemadler@....
Thought this'd be be of interest.
jaynemadler@...
/--------- E-mail Sponsored by Fox Searchlight

If this is going to be a political site, then count me out. Lets start see some
responsible moderating.

I think this must be an old story, I just read in the Fall 2004 NMSS
clicnial trials report that this study was terminated.

Adapted from The Daily Motivator

Saturday, November 27, 2004

Pleasantly surprised

A pleasant surprise awaits out there beyond what you know you can do. There is a precious treasure waiting to be mined out beyond your comfort zone.

Almost every skill you now possess was once beyond your abilities. Every place where you now feel comfortable and at home was once unknown to you.

There are more things that you can do and higher levels that you can reach. They can soon be comfortable and familiar even though they seem a little intimidating from where you are now are.

Push yourself a little bit beyond what you know you can do, and you will discover something truly empowering.

You will discover that you can indeed step forward into unknown territory, and you will uncover valuable treasures you never knew you were missing. Your levels of confidence and competence will grow beyond anything you could have previously imagined.

Push yourself a little bit beyond where you are now, and you will be pleasantly surprised with where it takes you.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.
http://greatday.com/motivate/index.html

[INLINE]

~Joyce [INLINE]
There is nothing that cannot be accomplished with prayer except that which is outside God's will.

I recently bought a home in southeast, DC with a chair lift intact. I would like to donate this to someone that can benefit from it. The unit is disconnected and can be picked up at a mutually arranged time (it is definitely a heavy unit). If you would like more information or would like to make arrangements to pick up the unit, please contact me at: perrydixon7@.... Perry Dixon

A USC-invented vaccine for multiple sclerosis (MS) is about to enter
Phase II clinical trials
http://www.usc.edu/hsc/info/pr/1vol5/526/ms.html
A USC-invented vaccine for multiple sclerosis (MS) is about to enter
Phase II clinical trials, backed by a combined $3.5 million in
funding-including a $1.1 million award from the National Multiple
Sclerosis Society that is one of its largest in recent memory, as well
as $2.4 million from the National Institute of Neurological Disorders
and Stroke (NINDS).
While the vaccine is unlikely to rid patients of their current MS
symptoms, said Keck School of Medicine professor Leslie Weiner, chair of
the Department of Neurology and co-inventor of the vaccine, results from
the Phase I study on four patients indicate that it may well be able to
halt the disease in its tracks.
Weiner and former faculty member Jorge Correale, now head of neurology
at FLENI, a foundation and neurologic institute in Buenos Aires,
Argentina, that is involved in the fight against neurological diseases,
came up with the idea for the vaccine together some 6 years ago. A
patent is currently pending, and the Phase II trial has an
Investigational New Drug number, which means the Food and Drug
Administration has looked at and approved the trial.
Multiple sclerosis is a chronic and oftentimes progressive and
debilitating condition that affects some 250,000 to 350,000 Americans.
According to the NINDS, physicians diagnose 200 new cases of MS each
week. It seems to be an autoimmune condition, a disease in which certain
white blood cells turn on the body that produces them.
The best current hypotheses say that MS is caused by the body's T-cells
attacking the myelin sheaths that serve as the insulation for the
conduction of electricity and coat and protect the long, delicate axons
of the brain's neurons.
"This vaccine allows the patient's immune system to take control of the
disease," said Weiner. "At the end of two years of vaccinations, we hope
they will never need treatment again."
Weiner and his USC colleagues are currently recruiting patients for the
three-year-long trial, in which 40 people with MS will receive the
active vaccine and another 40 will receive a placebo.
Patients are eligible for the trial if they have what is known as
secondary progressive multiple sclerosis-they had periods of both
remission and relapse for some time, and now are experiencing a
significant progression of the disease (though they may still be
symptom-free at times). They also must be between 12 and 65 years of age
and be able to walk at least 50 feet, though use of a cane or walker is
acceptable.
"It's a very hard task to take sick patients and ask 40 to get a placebo
and go off everything else," Weiner admitted. "But we think it's worth
it because of the potential benefits of this vaccine." In addition, he
noted, most of the patients in this trial will likely be treatment
failures on the limited number of treatments available for MS, and so
abandoning those treatments should not be detrimental.
Patients accepted into the trial will have a baseline MRI to measure the
MS lesions in their brains, and then will undergo a process called
leukapheresis, in which their white blood cells are removed from their
body. (Since the body is continually producing white cells-and in fact
will replace the ones removed within 24 hours-this does not have any
long-term effect.)
To create an individualized vaccine, the research team will then expose
those cells to myelin from a cow brain, which should prompt the
characteristic MS response from the misguided, autoimmune T-cells. (The
cow brains have been examined for any evidence of the so-called mad cow
disease-bovine spongiform encephalopathy-in collaboration with Nobel
laureate Stanley Prusiner of the University of California, San
Francisco, and have been approved for use in the preparation of these
vaccines.)
Those T-cells are then exposed to 12,000 rads of radiation, killing them
and at the same time altering them subtly, so that when they are
reintroduced into the body, they will be seen as foreign. That
reintroduction-or vaccination-should prompt the immune system to create
antibodies and reactive T-cells against the MS-causing T-cells. "We
vaccinate them against their own bad T-cells, their own bad
lymphocytes," Weiner explained. "After that, they should be immune to
the cells they produce that attack their white matter at any time in the
future, because they have a memory for the bad T-cells."
How will this help the patient? Simply put, if the body destroys the
autoimmune T-cells before they can get to the myelin, this
sometimes-devastating disease should be stalled in its tracks. "We don't
anticipate that it will get anyone out of a wheelchair," said Weiner.
"But we think we can prevent the progression of the disease. We will
have made their immune systems 'normal' again, leaving the future repair
of their nervous system an easier task."
Vaccines will be created for both the vaccine and placebo groups. If the
trial shows that the vaccine is useful, it may be possible to then
vaccinate the placebo group as well.
Weiner is optimistic about the vaccine's chances.
"We're giving them weapons to kill their self-immune responses, which
you and I can do on our own. In the vaccinated patients, the good
T-cells are interacting with the bad T-cells and killing them."
The patients will receive vaccinations every month for three months, and
then every three months for two years at the General Clinical Research
Center, an NIH-supported facility at LAC+USC Medical Center. The third
year of the study will simply be follow-up, to see whether the effects
of the vaccination persist over time.
The vaccine will be deemed successful if it can halt the progression of
existing lesions and the appearance of new MS lesions, as measured by
MRI. Weiner and his colleagues will also look at any changes in
neurologic function and will be monitoring any and all side effects of
the vaccine.
From a scientific point of view, Weiner noted, the study will most
likely put the lid on the debate over whether myelin is indeed the
immune system target in MS; scientists have long assumed that to be the
case, but it has yet to be definitively proven.
An even more interesting question that the trial will address, he noted,
is just how the immune system is able to get quite so out of control,
spewing out the literally self-destructive T-cells at an ever-increasing
rate.
"The implications of this trial are really quite interesting," said
Weiner. "We've made a case that this is worth doing scientifically.
Overall, I think this trial is very exciting for USC, especially since
the vaccine was invented, developed and manufactured here."
by Lori Oliwenstein
http://members.cox.net/marty.altman/Page%20-%20MS%20Cure.htm

If You Have "UI", There's Plenty of Help for You
Contact: Christine Hendriks, Vice President, External Affairs; Damian Becker,
Assistant Director, External Affairs (516) 632-3919
November 15, 2001 - Oceanside, NY - If you have "UI" (urinary incontinence),
you are not alone and you don't have to live with it, either.
According to J. Andrew Fantl, MD, a pioneer in urogynecology and physician
at South Nassau Communities Hospital, the most important thing to know
about UI, the involuntary leakage of urine, "is that it is curable and can be
effectively managed by an array of treatments and techniques. About 80
percent of the people who are treated for UI are cured or achieve substantial
improvement."
Today, more than 13 million Americans suffer from UI, and many are too
embarrassed to seek the help they need. In fact, four out five people with UI
don't seek medical treatment, choosing instead to live with the physical and/or
emotional distress it causes. The Agency for Health Care Policy and
Research says that because of the social stigma associated with UI, it is vastly
underdiagnosed and underreported.
UI can occur at any age and can be caused by many physical conditions.
Women and senior citizens are more prone to the condition than men. It
affects 20 percent of the women between 15 and 64 years old, while only 5
percent of men are affected.
There are many different types of incontinence; the most frequently diagnosed
are overflow, stress, urge, reflex and functional. Overflow incontinence is
caused by bladder or urethra dysfunction that prevents the bladder from
discharging completely, resulting in frequent leakage. Stress incontinence
occurs when an individual involuntarily releases urine during routine activities
and common occurrences that put pressure on the abdomen, such as
exercising or gardening and sneezing, coughing or laughing. Urge
incontinence is the repeated sudden need to urinate, which can't be
controlled to the point that leakage occurs before reaching a restroom. Reflex
and functional incontinence are most often linked to neurological and
physical disabilities, including Parkinson's disease, Alzheimer's disease and
multiple sclerosis.
"For the many types of UI, there are an equal number of effective, patient-
centered, non-invasive and minimally-invasive treatments that will control or
cure UI, eliminating the emotional and physical stress it causes," said Dr.
Fantl.
Dr. Fantl most often employs bladder-training techniques to treat urge
incontinence and muscle specific exercise for stress incontinence.
Approaches such as distraction and prompted voiding (which is urinating on a
schedule) have proven to be effective at controlling the urge to urinate. Pelvic
muscle exercises (clinically referred to as Kegel exercises) help strengthen
weak muscles around the bladder, which are the most common cause of
stress incontinence.
Some cases, however, require medication or even surgery. Prescriptive
remedies are used to replace hormones, stop abnormal bladder muscle
contractions or tighten sphincter muscles. Surgical procedures are performed
to correct severely weakened pelvic muscles, remove tissue that may be
causing blockage, or fix the position of the bladder neck in women with stress
incontinence.
Under the direction of Dr. Fantl, South Nassau's Women's Health Center in
Bellmore offers a comprehensive UI program. The Center employs state-of-
the-art diagnostic modalities, including multi-channel urodynamics and
urethrocystocopy, and uses the most advanced non-surgical and surgical
treatments. If you feel you require treatment for UI, call 1-877-South-Nassau.
South Nassau Communities Hospital is one of the region's largest hospitals,
with 429 beds, more than 820 physicians and 1,900 employees. Located in
Oceanside, NY, the Hospital is an acute care, not-for-profit, voluntary teaching
hospital. The Hospital provides ambulatory, home health, curative, restorative,
preventive and emergency medical care, excels in cancer and cardiac care
and pain management and offers comprehensive diagnostic treatment and
behavioral health, rehabilitation and support services. South Nassau is a
partner in the Winthrop South Nassau University Health System, Inc.
Top
Back to Press Releases

©2000 South Nassau Communities Hospital. All Rights Reserved.
For Info Call: 1-877-SouthNassau or email us.

This is spam. I just read this from days ago. Is there no rule against spamming the list with political propaganda?

I stumbled across this website trying to figure out why I have yawning issues.
http://thalamus.wustl.edu/course/
I think it is very interesting. It explains a lot of the nerves, motor pathways,
somasensory pathways, where they are, what they do..
Just thought it was worth sharing..

I am now jayne10@... as well as jaynemadler@...
Let' s hope this does it. ;)
Jayne

I'll post some more useful web addresses but for right
now
I think you might make reference to the

That is something I'll try & do. Give m a little time,
Cyd.
Jayne

=====

Could you all post links or subscription information to all these newsletters or websites you use?

(like this Medline plus that I just found and subscribed to here)

Thank you

Cyd

I am now jaynemadler@... as well as
jyn_dlr@...
I hope this will be the last such message
needed. ;)

Now I have an excuse for being a dumb blonde!!! HAAAAA!!!

Chronic Pain Shrinks People's Brains

By Robert Roy Britt
LiveScience Senior Writer
posted: 22 November, 2004
5:00 p.m. ET

[INLINE]

Pain causes an unexpected brain drain, according to a new study in which the brains of people with chronic backaches were up to 11 percent smaller than those of non-sufferers.

People afflicted with other long-term pain and stress might face similar brain shrinkage, said study leader A. Vania Apkarian of Northwestern University.

The results suggest those with constant pain lose gray matter equal to an oversized pea for each year of pain. Gray matter is an outer layer of the brain rich in nerve cells and crucial to information and memory processing.

The results don't reveal why the brain shrinks, but it might involve degradation of neurons, which are the signal transmitters of the mind and body.

"It is possible it's just the stress of having to live with the condition," Apkarian told LiveScience. "The neurons become overactive or tired of the activity."

Another possibility is that people born with smaller numbers of neurons are predisposed to suffering chronic pain. But some of the differences measured "must be directly related to the condition," Apkarian said.

The research involved a one-time brain scan of 26 people who'd had unrelenting back pain for at least a year (and in one case for up to 35 years), along with a pain-free control group. Pain sufferers had lost 5 to 11 percent of gray matter over and above what normal aging would take away.

"People who have had pain for longer times have had more brain atrophy," Apkarian said.

No attempt was made to correlate brain size to brain function. It is possible that some of the shrinkage involves relatively noncrucial tissue -- other than neurons -- and that some of the effects are reversible if the pain is eliminated, Apkarian and colleagues write in the Nov. 23 issue of the Journal of Neuroscience.

Apkarian said other varieties of pain might cause a similar atrophy of gray matter, and he plans to study that possibility in future studies.

"Suffering of pain is fundamentally an emotional condition," Apkarian said. "Different types of pain will have different types of emotional parameters, which will probably result in different types of atrophy -- different amounts and in different brain regions."

* .

Adapted from The Daily Motivator

Friday, November 26, 2004

Overwhelm the darkness

When there is a negative situation that you cannot change, focus your thoughts and energy elsewhere. When there is a pain that will not go away, overwhelm it with an even greater amount of joy.

It serves no useful purpose to get mired in despair over things you cannot control. It makes much more sense to do the very best and achieve the most with those things you do control.

You can choose where to focus your energy and attention. Focus on the areas where you can have a powerful positive impact.

Yes, it can be easy to get caught up in the negativity of the moment. It also can be surprisingly easy to shift your focus toward the positive, productive things you can do.

You are never obligated to be miserable. If you really want to contribute to life, set your sights on the value you are able to create.

Don't despair over the darkness that is beyond your control. Shine your own light so brightly that the darkness is overwhelmed.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.
http://greatday.com/

[INLINE]

~Joyce [INLINE]
The more simple we are the more complete we become.

Oral integrin antagonist drug for MS being developed

The article below from NYTimes.com
has been sent to you by jaynemadler@....
Still another, Carol.
jaynemadler@...
/--------- E-mail Sponsored by Fox Searchlight

I'm definately now jaynemadler@...

Sent: Wednesday, November 24, 2004 12:08 AM
Subject: Election Fraud Information

The leadership of the Democratic Party has failed us because they have allowed the media to suppress the news that the DNC should be screaming about. It's time for the average democrat to take the time to be educated on the issue of election fraud, voter suppression and disenfranchisement that the DNC has remained quiet about allowing the GOP to strengthen their control in the Executive and Legislative branches of our government.
Sign the petition below to demand congress does more than just investigate the âtens of thousandsâ of election fraud abuse incidents. http://www.thepetitionsite.com/takeaction/636288161

Also, let it be known that â We the Peopleâ should demand a nationwide revote! Call (561) â 889 - 2165 or email activistdemocrat1@... to participate with the âMarch on Washington D.C.â on December 11, 2004. This is the day before the Electoral College votes to decide who will be representing the United States as either the 43^rd or 44^th President of the United States.

Thu, Nov 25, 2004
Doctor on probation for self-prescribing
By Jessica Bock
Wausau Daily Herald
jbock@...
A Wausau physician suffering from multiple sclerosis was sentenced to two
years of probation Wednesday in Marathon County court for misdemeanor
charges of prescribing pain medication for himself.
Dr. Thomas J. Strick, 45, 2414 Elmwood Blvd., also must perform 100 hours of
community service and pay $1,000 in fines, according to court records. His
drivers license has been suspended for six months.
Strick pleaded no contest and was found guilty Wednesday of seven charges
that were reduced to misdemeanors after he reached a plea agreement with
the district attorney's office.
The state Medical Examining Board limited Strick's license in October 2002,
according to the Wisconsin Department of Regulation and Licensing. An
evaluation determined he was addicted to painkillers, and the board ordered
him to undergo treatment and monitoring of his rehabilitation. Strick now is
employed at the Wausau Family Practice Center. He continues to comply with
the board's requirements, said Gene Linehan, Strick's attorney.
Strick was unaware doctors can be charged with a misdemeanor for
prescribing themselves medication, Linehan said.
"This has been really hard for him. He just made a bad mistake to self-
medicate for his pain," Linehan said.
Linehan said his office received many letters and phone calls in support of
Strick from residents and doctors.
Strick originally was charged in January with 11 counts of obtaining a
controlled substance by fraud. Linehan said Strick was wrongly charged with
felony counts because the crimes were misdemeanors.
Ken Heimerman, the prosecutor handling the case, did not return a phone
message on Wednesday.
Comment on this Story
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Please include phone number for verification purposes if you want your
comments considered for inclusion on our opinion page.
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In addition, my current email addy is jaynemadler@... or
Jayne10@...
Jayne

[INLINE]

Adapted from The Daily Motivator

Thursday, November 25, 2004

Connect to abundance

A vast abundance stretches out in every direction from where you are right now . Sometimes, though, it can be difficult to see.

There is something that never fails to open your eyes to the abundance all around. This something is gratitude.

Gratitude imparts positive value and meaning wherever it is directed. It shines a brilliant light on the abundance and possibilities that life has to offer.

Gratitude not only connects you with abundance, but it also increases the richness of this abundance. The more thankful your heart is the more there is for which to be thankful.

Take a few quiet moments and allow your heart to be thankful. The joy you feel comes from knowing without a doubt that you are connected to life's goodness and abundance.

Go forward with a thankful heart, and your eyes will be opened to the best of possibilities.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.

http://greatday.com/motivate/index.html

[INLINE]
~Joyce
"Perseverance is not a long race; it is many short races one after another."
- Walter Elliott

New Multiple Sclerosis Therapy Licensed
BETHESDA, MD, 24 November 2004 The Food and Drug Administration
(FDA) yesterday licensed natalizumab for reducing the frequency of relapses
in adults with relapsing forms of multiple sclerosis (MS).
Natalizumab, formerly known as Antegren, will be marketed in the United
States as Tysabri by Biogen Idec and Elan Corp. At a Web teleconference this
morning, Elan and Biogen officials said they expect to begin shipping the
product to wholesalers early next week. Bob Hamm, senior vice president of
Biogen's North American immunology unit, said the product should be
available to patients "within a couple weeks."
MS is a demyelinating central-nervous-system disease that is thought to result
from an autoimmune reaction. The disease exists in chronic progressive and
relapsing forms. According to the product's FDA-approved labeling, the safety
and efficacy of natalizumab have been demonstrated only for relapsing forms
of MS.
Natalizumab is a humanized mouse monoclonal antibody to cell-surface
integrins found on most leukocytes. The antibody is believed to reduce MS
flare-ups by blocking the binding of the integrins to their receptors, thereby
preventing the immune cells from migrating from the bloodstream to inflamed
areas of the central nervous system.
The recommended dosage of natalizumab is 300 mg infused intravenously
over one hour every four weeks. The product is supplied as 15-mL single-
dose vials in a sterile buffered solution containing 300 mg of natalizumab that
must be diluted with 100 mL of 0.9 percent sodium chloride injection, USP,
before use. Natalizumab concentrate should be stored at 28 degrees C.
Once diluted, natalizumab solution may be stored at 28 degrees C for up to
8 hours until use but should be at room temperature when given to the
patient.
According to FDA, most adverse events that occurred in clinical trials of
natalizumab were mild and included "non-serious" infections of the urinary
tract or lower respiratory tract, headache, depression, joint pain, and
menstrual disorders. The product's labeling states that serious adverse events
were rare and included hypersensitivity reactions that usually occurred within
two hours after the infusion began.
Patients who suffer a hypersensitivity reaction to natalizumab should not
receive additional doses of the product, according to the labeling.
Kate Traynor

Jobs at ASHP | Internships and Residencies at ASHP | Business
Opportunities with ASHP | ASHP Research

I just wish they would find a pill to remyelinate us.

Hotwheel@...

Or

MrBill26@...

My understanding is that Teriflunomide and laquinimod are both ahead of
Serono's cladribine in the clinical trial process, but in any case, if we're
really
lucky, there could be 4 or more oral MS treatments by 2010...
Serono aims at Glaxo in MS race
Swiss biotech company expects to produce the world's first pill for multiple
sclerosis.
November 24, 2004: 10:52 AM EST
LONDON (Reuters) - Swiss biotechnology company Serono SA expects to
beat GlaxoSmithKline Plc in the race to develop the world's first pill for
multiple sclerosis, a top executive said on Wednesday.
GSK (Research) said on Tuesday it planned to file in 2008 for regulatory
approval of a novel MS tablet, offering patients an alternative to the current
injection treatment. This would imply a launch in 2009.
But Andrew Galazka, Serono's head of scientific affairs, told Reuters his
company's oral drug cladribine could get to market a year faster.
"We believe we can move that drug along very quickly from where we are
currently ... we could be launching that product in 2008," he said in a
telephone interview from Geneva.
Serono is talking with the U.S. Food and Drug Administration and European
regulators to agree on the next phase of clinical studies, and these
discussions should finish in the next few weeks, he added.
Multiple sclerosis, a notoriously difficult disease to treat, is emerging as an
important new market for drug companies who hope to exploit recent scientific
breakthroughs to launch better and more convenient medicines.
Industry analysts expect the market for treatments to grow from about $3.5
billion currently to about $6 billion over the next few years.
The latest arrival in the marketplace is a once-a-month intravenous treatment
called Tysabri, formerly Antegren, from Ireland's Elan Corp Plc (Research)
and Biogen Idec Inc. of the United States.
It is the first kind of drug to prevent inflamed cells from escaping into the
tissue
of the brain, where they can cause unpredictable neurological problems, and
it has produced superior results to existing drugs in clinical trials.
Despite the new competition, Galazka said he still expected Serono's
established injectable drug Rebif to be number one in the global MS market
by 2006.
He noted that Tysabri had been reported to cause some serious problems,
including infections, pneumonia and low blood pressure. Biogen and Elan
say these are uncommon.
Tysabri clearly represents an advance but the "holy grail" of MS treatment is a
drug that can be given by mouth.
Also in the race to find an MS pill is Israel's Teva Pharmaceutical Industries,
which earlier this year licensed rights to an experimental drug from Sweden's
Active Biotech AB called laquinimod.
http://money.cnn.com/2004/11/24/new...serono_ms.reut/
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Adapted from The Daily Motivator

Wednesday, November 24, 2004

Truly successful

True success is based on how helpful and valuable you can make yourself but not on how obnoxious you can be. True success is based on how much love you can inspire but not on how hateful of spiteful you can be.

True success is based on how much beauty you can see and appreciate but not on how much glamour you can project. True success is based on the real value you are able to create but not on how much you can take.

When everything you do is all about you, then nothing you do will really matter. Even if you drive the most intimidating vehicle on the road and have the most prestigious address in town, life will be empty if you are the only person you truly care about.

Being absorbed only with yourself is the quickest route to misery. In contrast the more genuine consideration you have for others the more blessed your life will be.

Before you act you can think of how your actions will affect others. Seek to make a positive difference for the people around you and you will find real, lasting success and fulfillment flowing into your own life.

Each moment you have an opportunity to be truly successful by contributing your own special value to life. Think and act beyond yourself, and there is no limit to the real success you can achieve.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.
http://greatday.com/motivate/index.html

[INLINE]

~Joyce [INLINE]
Your self-esteem and self-worth should not be measured by your car, dress size, golf score or bank account.

Secret Lab
Secret Lab?
Sunday 14, November-2004
by Tony Best
http://tinyurl.com/5grkz
http://www.nationnews.com/StoryView.cfm?Record=55222&Section=LO&Current=2004%2D1\
1%2D14%2000%3A00%3A00
A regenerative stem cell research institute appears to be up and running
in Barbados, according to the Financial Times of London.
The institute, stated the newspaper, is being financed by a group of
American and Ukrainian investors and scientists who are teaming up to
conduct research and provide therapy to patients using foetal stem cells
at a cost of (US)$25 000 per person.
But while Barnett Suskind, Chief Executive of the Barbados Institute,
told the major business paper that they had started providing therapy to
patients six weeks ago "with the government's approval," Dr. Elizabeth
Ferdinand, acting Barbados' Chief Medical Officer was quoted as saying:
"I have not been aware of the issue and have no comment to make at this
stage."
So far, three patients have been treated and the Institute plans to
focus on people suffering from auto-immune diseases, diabetes and
neurological disorders.
Suskind expressed the hope that the Institute could establish a working
arrangement with the Queen Elizabeth Hospital so that formal clinical
trials of stem cell therapy for congestive heart therapy could be
carried out in association with the QEH.
Stem cell research is one of the hotly debated scientific issues in the
United States, Britain and other parts of the world. Stem cells, taken
from body have the ability to divide repeatedly and researchers and
others have succeeded in isolating and growing human stem cells in a
laboratory.
Scientists contend stem cells can be used to replace damaged tissues and
can treat such diseases as Parkinson's and diabetes.
Plans call for the Barbados Institute to import stem cell preparations
from the Ukraine where they come from aborted foetuses of six to 12 week
gestation, stated the paper.
The treatment and the research was developed at a scientific institute
in the Ukraine headed by Valentin Grischenko, who said in London that
almost 20 years of clinical experience had shown that stem cell therapy
was both safe and effective.
When asked about the Institute and its plans for Barbados, Dwight
Thompson the Barbados Tourism Authority's acting director of corporate
communications, said that the tourism destination "has long been a
destination for wellness and health because of its wonderful climate. We
have a long tradition of people coming here to get well."
However, he was quick to say "from a tourism standpoint we will look at
this on its merits. We would probably like to promote it if it meets
correct legal requirements. If Government takes a position that it is
too controversial (to promote) then we would have to consider that".
http://www.nationnews.com/StoryView.cfm?Record=55222&Section=LO&Current=2004%2D1\
1%2D14%2000%3A00%3A00
http://tinyurl.com/5grkz

Quadriplegic man travels to China for stem cell research
Originally published Friday, November 12, 2004
By Kevin Otzenberger
Times-News correspondent
http://www.magicvalley.com/news/localstate/index.asp?StoryID=12856
BLISS -- A 31-year-old Bliss man will travel to China in January to
undergo an experimental treatment that might help him move the fingers
that haven't moved since an accident 14 years ago.
Pruett was 17 when he broke his neck and severed his spinal cord in a
car accident, leaving him a quadriplegic confined to a wheelchair.
Today, he will be the first person from Idaho and one of the first
Americans to travel to Beijing, China, to take part in a stem cell
research project.
"The good thing about living in a small community is the support you get
from everybody," Pruett said Thursday. "I haven't gotten any hate mail
yet."
In fact, his family and friends are sponsoring a benefit Saturday to
help fund the trip to Beijing.
"Chris didn't give up on us, and we're not giving up on him," said
Pruett's father Jimmy.
After the accident, Pruett finished his senior year at Bliss High School
and went on to earn a degree in business from Boise State University. He
now works as a broker for Clearwater Mortgage and despite his inability
to walk and having just minimal function of his hands, still spends his
weekends fishing, hunting, tubing down the Snake River, even skydiving.
He's hoping the treatment will give him the ability to do even more.
"I realistically believe that this surgery can give me back the use of
my hands," Pruett said.
In the procedure, the physician takes cells from the nerve center of the
olfactory bulb in the nose of fetal tissue and injects about 500,000
cells above and another 500,000 cells below the location of the spinal
injury.
"We've been saying stem cells because people can wrap their minds around
it the easiest, Pruett said. "You can get stem cells from the olfactory
bulb, separate the cells out one way, you get stem cells. Separate those
out the other way and you get what they will inject into my spine.
They're called OET cells."
Pruett will be leaving for China Jan. 3 and will return Feb. 1. The
surgery will take place about a week after his arrival after doctors
conduct tests to match blood types and culture the cells. The trip and
surgery will cost between $20,000 and $25,000. Pruett's mother, Sherry
Pruett, will accompany her son on the trip as his health-care provider.
"This could open up a world of opportunity for him," Sherry Pruett said.
"There are still a lot of things that we have to do for him, and if this
works, he can be totally independent."
It will be an adventure for both mother and son.
"My travel radius is like 400 to 500 miles from home, so this is going
to be quite a culture shock for us, I think," Sherry Pruett said.
Several years ago, Pruett contacted a doctor in Portugal, but was
rejected from that program because his injury had already occurred more
than five years earlier. Pruett started doing some research online and
found a doctor named Hung Young Huang in Beijing. Huang got back with
Pruett last Thanksgiving and has since been collecting test results to
prepare Pruett for the procedure.
"In China, their attitude is that it's cheaper to do the surgery than to
support them for however long they live. It's just a fact of their
economy. As far as politics, abortion was a national law for years, so
they're not opposed to this sort of thing."
Dr. Huang has worked extensively with a variety of spinal injury
patients, some who had been injured 30 years before and others who had
as many as three separate injuries. Huang has also done research on ALS,
Alzheimer's and Parkinson's diseases.
Another doctor Pruett plans to meet in China is Wise Young, one of the
leading researchers in spinal cord injuries. Young recently appeared on
CBS's "60 Minutes" following the death of the actor and director
Christopher Reeve, who had been paralyzed in a fall from a horse in 1995
and became a tireless advocate for people suffering from injuries and
illnesses of the central nervous system.
"Chris Reeve dealt the hand he was given," Pruett said. "I think he made
a lot of people aware of the problem, but I don't know how much of a
difference it made since there still is nothing happening in the United
States."
Pruett said there's no federal funding for stem cell research, but
California recently passed a bill to give it state funding, $1 billion
over three years.
"If the federal government lifted the ban on stem cell research
tomorrow, and we put the cells in front of a scientist right then, any
treatment on humans would still be 15 years away" Pruett said. "That's
how slow our medical system is working."
Fund-raiser to help Bliss man
Chris Pruett's family and friends will sponsor a Basque dinner and
auction Saturday to help pay to send Chris and his mother, Sherry to
Beijing, China, where Chris, a quadriplegic, will receive an
experimental medical treatment. The evening will begin at 5 p.m. at the
Bliss Fire Station on Highway 30 in Bliss. Dinner will be $10 per person
or $35 for a family of four. Children under 5 years old eat for $2.
Donations can be sent to the Gooding Pioneer Federal Credit Union, and
checks must be made payable to the Bliss Quick Response Unit.
http://www.magicvalley.com/news/localstate/index.asp?StoryID=12856

Health Canada fast tracks review of multiple sclerosis drug
Last Updated Mon, 22 Nov 2004 21:28:46 EST
TORONTO - Some Canadians with multiple sclerosis are encouraged by the
early results of a study on a new kind of treatment for the disease.
The drug Antegren prevents white blood cells from migrating to the central
nervous system and flooding the brain, where the cells can cause damage.
Dr. Paul O'Conner
The study included 942 patients with relapsing-remitting MS, the earliest
phase of the disease.
After one year, patients on Antregen had two-thirds fewer relapses or attacks
compared to patients given a placebo.
"In general, you can say that this is the greatest therapeutic effects ever seen
in year one for a trial of a multiple sclerosis drug," said Dr. Paul O'Connor,
the
lead Canadian investigator for the trial.
Doctors also saw fewer brain lesions in the MRI scans of those taking
Antegren, and those in the drug group reported few side effects.
Both the U.S. Food and Drug Administration and Health Canada found the
results impressive enough to give the drug priority for review.
The FDA is expected to make a decision about Antegren by the end of this
month, and Health Canada's decision will come next year.
All patients in the trial now receive monthly treatments of Antegren as
investigators study the long-term effects of the drug.
Until Antegren has gone through several years of testing, no one can say if
the therapy achieves its goal of stopping the early form of MS from
progressing to a more disabling phase.
When the drug is approved, it is likely to be expensive.
"It will be a significant cost for those that do not have proper drug coverage,"
said Mel Grant of Toronto, one of the patients in the drug trial. "There is some
talk that it could cost up to $20,000 a year."
Written by CBC News Online staff
Headlines: Health & Science
* HIV infections reach record level: UN report
* Website tracks beef from hoof to plate
* Deadly tropical fungus settles in B.C.
* Health Canada fast tracks review of multiple sclerosis drug
* Broader definition of death debated to boost organ dono

Geron Announces Publication of Study Results Showing That Human
Embryonic Stem Cell-Derived Oligodendrocytes Remyelinate In Vivo
November 22, 2004 07:30 AM US Eastern Timezone
http://home.businesswire.com/portal/site/altavista/index.jsp?ndmViewId=news_view\
&newsId=20041122005220&newsLang=en
http://tinyurl.com/4pn5t
MENLO PARK, Calif.--(BUSINESS WIRE)--Nov. 22, 2004--Geron Corporation
(Nasdaq:GERN) announced today the publication of a study which
demonstrates that oligodendrocytes can be differentiated from human
embryonic stem cells (hESCs) and when injected into the spinal cord,
will produce myelin, the biological "insulation" critical for
maintenance of electrical conduction in the central nervous system.
Myelin is destroyed in patients with spinal cord injury or
dysmyelinating diseases such as multiple sclerosis.
In the journal Glia, Dr. Hans Keirstead and his colleagues from the
Reeve Irvine Research Center at the University of California at Irvine
in collaboration with scientists from Geron published study results
showing that hESCs can be differentiated efficiently into early stage
oligodendrocytes, known as oligodendrocyte progenitors, as well as into
mature oligodendrocytes. Throughout the differentiation protocol, the
cells display correct morphology and specific markers characteristic of
their oligodendrocyte lineage and maturation stage.
Oligodendrocytes are cells that wrap around neurons and shield them,
thereby facilitating electrical transmission in the central nervous
system. Dysmyelination of neurons leads to the sensory and motor
deficiencies associated with multiple sclerosis and spinal cord injury.
In the study, Dr. Keirstead injected the hESC-derived oligodendroglial
progenitors into the spinal cords of Shiverer mice. These mice lack
myelin in their central nervous system, develop a characteristic shaking
behavior, and die early after only 10-12 weeks of life. After
transplantation into the Shiverer mice, the hESC-derived
oligodendrocytes survived and migrated appropriately within the spinal
cord. Patches of myelin basic protein and compact myelin were observed
wrapping neurons in the spinal cord.
"The studies show that oligodendrocytes can be derived from human
embryonic stem cells and that they function normally in a disease
environment," stated Hans Keirstead Ph.D. "This is an important
confirmation of what we suspected was occurring. Remyelination of
neurons is a crucial step in restoring function to a damaged spinal
cord. Combined with the positive results of our previously reported
efficacy model, we believe we have a therapeutic opportunity."
This work was conducted with support from Geron Corporation and a
University of California Discovery Grant. "This work significantly
advances the potential clinical use of human embryonic stem cells for
spinal cord injury," stated Thomas B. Okarma Ph.D., M.D., Geron's
president and chief executive officer. "We are actively engaged in
IND-enabling preclinical studies in pursuit of this goal."
Geron is a biopharmaceutical company focused on developing and
commercializing therapeutic and diagnostic products for cancer based on
its telomerase technology, and cell-based therapeutics using its human
embryonic stem cell technology.
This news release may contain forward-looking statements made pursuant
to the "safe harbor" provisions of the Private Securities Litigation
Reform Act of 1995. Investors are cautioned that such forward-looking
statements in this press release regarding potential applications of
Geron's human embryonic stem cell technology involve risks and
uncertainties, including, without limitation, risks inherent in the
development and commercialization of potential products, need for future
capital, need for regulatory approvals or clearances, reliance on
collaborators and maintenance of our intellectual property rights.
Actual results may differ materially from the results anticipated in
these forward-looking statements. Additional information on potential
factors that could affect our results and other risks and uncertainties
are detailed from time to time in Geron's periodic reports, including
the quarterly report on Form 10-Q for the quarter ended September 30,
2004.
http://tinyurl.com/4pn5t
http://home.businesswire.com/portal/site/altavista/index.jsp?ndmViewId=news_view\
&newsId=20041122005220&newsLang=en

ECISION - DIAGNOSIS OF EVENTS IN CLINICALLY ISOLATED SYNDROME
PATIENTS BY IMMUNO-NEUROLOGICAL MARKER.
DECISION is a prospective, exploratory and confirmatory study, validating
Glycominds gMS serological assay as a predictor for MS disease activity by
evaluating high serum levels of anti glycan antibodies in clinically isolated
syndrome patients as for having a next clinical or sub-clinical event within a
6-
24 month period.
DECISION study design was accomplished to reflect the company's business
strategy by accompanying the top opinion leaders in the MS field to our side
Three hundred and eighty five (385) patients with CIS (clinically isolated
syndrome) suggestive of MS (first neurological episode and MRI scans
showing two or more clinically silent lesions), who elect not to start treatment
with disease modifying drugs (DMDs), will be recruited from approximately 80
MS centers based in the US, Canada and Israel.
Steering Committee Members
DECISION study design was accomplished by accompanying the top opinion
leaders in the MS field to our side.
Dr. Stuart Cook, Former President, UMDNJ; DECISION Principal Investigator
Dr. Jeffrey A. Cohen, Mellen Center for MS Treatment and Research,
Cleveland Clinic Foundation
Dr. Hillel Panitch, Professor of Neurology, University of Vermont College of
Medicine
Dr. Jerry S. Wolinsky, Bartels Family Professor of Neurology, University of
Texas Health Science Center at Houston
Dr. Mark S. Freedman, Professor of Medicine, University of Ottawa, Director,
Multiple Sclerosis Research Clinic, Ottawa Hospital-General Campus
Dr. Gary Cutter, Professor of Biostatistics and Director. University of Alabama
School of Public Health
Patients
Physicians
If you are interested on receiving updates regarding the DECISION study
please notify us at: DECISION@...
© 2004 Glycominds Ltd. All Right Reserved

Adapted from The Daily Motivator

Tuesday, November 23, 2004

Become the person

There is a life you want to live. To experience this life you must become the person who will live it.

If the circumstances of your life are not yet what you desire, there is a reason. It is because you have not yet become the person you desire to become.

The outer circumstances of your life will change for the better precisely to the extent that you change for the better inside. Become the person who can live your dream, and this dream will become real.

You cannot directly control everything in the world around you, but there is no need for this anyway. By controlling your own thoughts, feelings and actions you can bring about anything you truly desire.

Success grows from the inside out. This is why you will never be fulfilled by merely acquiring the tokens of success.

Become successful on the inside to the point where the superficial tokens of success do not matter, and you will surely have more than you could ever desire.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.
http://greatday.com/motivate/index.html

[INLINE]

~Joyce [INLINE]
Forgiveness is a necessary choice that you can make to free yourself from the emotional prison of anger, hatred and bitterness.

Study shows stem cells can preserve vision
Public release date: 18-Nov-2004
Contact: Patti Jacobs
pjacobs12@...
617-872-0364
Schepens Eye Research Institute
Holds hope for sufferers of macular degeneration
Boston, MA For the first time researchers have shown that transplanted
stem cells can preserve and improve vision in eyes damaged by retinal
disease. In the cover article in the November 2004 Investigative
Ophthalmology and Visual Science, scientists from Harvard's Schepens Eye
Research Institute describe results of a mouse study in which
transplanted stem cells develop into retinal cells, prevent the death of
"at risk" retina cells in the recipient mice and improve the vision of
treated mice.
"These findings hold great promise for potential treatments for people
suffering from macular degeneration, diabetic retinopathy and other
retinal diseases," says Michael Young, PhD, an assistant scientist at
Schepens Eye Research Institute and the lead author of the study.
The retina is a tissue-thin membrane at the back of the eye responsible
for sending light and images from the outside world through the optic
nerve to the brain, which interprets them. The retina contains light
sensitive cells, known as rods, which make it possible for us to see in
black and white and in low light, and cones, which are responsible for
color and high-acuity vision. In diseases such as macular degeneration,
it is these cells that are being destroyed.
Believing that stem cells cells that have the capacity to change into
other kinds of cells could potentially save vision, Young and his team
decided to test their theory in mice. They transplanted retinal stem
cells from young "green" mice into the eyes of normal-colored mice that
had retinal disease. Green mice are genetically raised so that all their
tissues are fluorescent green. The green color makes it possible to
detect where the transplanted cells are and how they are growing and
changing.
After several weeks the team evaluated the eyes of the treated mice and
found that the green cells had migrated to where they were needed in the
damaged retina and had changed into what looked like normal retinal
cells. The scientists also found that many of the cone cells that were
on the verge of dying before the transplant appeared to regain or retain
their function. The researchers speculated that the transplanted cells
were secreting a factor or substance that saved these fragile cells.
(There is growing evidence that rod cells keep cone cells alive by
secreting a special factor)
To test whether the mice with transplanted stem cells could see better,
the team then placed them and the control mice (without the transplants
or with non-stem cell transplants) in dark cages and flashed a series of
increasingly lower level lights at both groups over a period of time.
Mice are photophobic and stop their normal activity when they detect
light. The researchers took advantage of this natural response and found
that the mice with the transplanted tissue continued to respond to the
light as it reached the lowest levels. The control mice did not.
"These are the first steps toward the use of stem cells for saving
existing vision and then -- down the road-- restoring vision that has
already been lost," says Young, who believes that stems cells will have
many roles to play in the fight against blinding diseases. Young and his
team are now investigating the same phenomenon in pigs, whose eyes are
larger and more like human eyes.
###
Members of the research team include: Henry J. Klassen, Tat Fong Ng*,
Yasuo Kurimoto*, Ivan Kirov, Marie Shatos*,
Peter Coffey, and Michael J. Young*
*Schepens Eye Research Institute, Department of Ophthalmology, Harvard
Medical School, Boston, MA 02114
Visual Transplantation Research Group, Department of Psychology,
University of Sheffield, Sheffield S10 2TP UK
CHOC Research, Children's Hospital of Orange County, Orange, CA 92868
The full article "Multipotent Retinal Progenitors Express Developmental
Markers, Differentiate into Retinal Neurons, and Preserve Light-Mediated
Behavior" can be obtained at http://www.iovs.org/current.shtml by
subscription or by emailing
pjacobs12@... .
Schepens Eye Research Institute is an affiliate of Harvard Medical
School and the largest independent Eye Research
Institute in the world.

Australian scientists re-grow cut cord
http://healthorbit.ca/newsdetail.asp?opt=1&nltid=142081104
8 November 2004 -- In a world first, Australian researchers have
discovered a mechanism for greatly enhancing regrowth of spinal cord
nerves after they are damaged, restoring the ability to walk in mice
within weeks of a spinal cord injury.
The University of Melbourne research team, led by Dr Ann Turnley at the
Centre for Neuroscience and Professor Mary Galea at the School of
Physiotherapy, found that removal of a molecule called EphA4 resulted in
significant regrowth of the spinal nerves following injury.
Mice without EphA4 regained 100% of their initial stride length within
three weeks of the injury and by one month had regained ankle and toe
movement. Their ability to bear weight on the affected limbs, to walk
and climb also improved and continued to do so for at least three months
after the injury.
Anatomical analysis revealed that a large percentage of the spinal cord
nerves had managed to grow across the damaged area of the spinal cord.
Dr Turnley says "when a person injures their spinal cord the effects are
often devastating and there is usually little chance that they will
regain much movement. There is an enormous amount of research being done
around the world to enhance recovery of people with spinal injuries.
"In the past it was believed that adult nerves lacked the ability to
regrow but work over the last few years has shown that not to be true
and we are now beginning to understand the mechanisms behind regrowth
and how to enhance it. Our recent findings are a major step forward in
this regard."
Dr Turnley says that EphA4 has been known for some time to be involved
in guiding nerves during development but their role in the adult was
unknown.
"The body enhances production of EphA4 following spinal cord injury and
we thought it therefore could prove pivotal in determining the outcome
of injury in the adult central nervous system.
"The surprising result we found was that EphA4 plays a vital role in
activating cells called astrocytes which are in turn responsible for
forming scarring in the damaged spinal cord, leading to inhibition of
nerve regrowth. Mice without EphA4 have very little scarring in the
spinal cord and so the nerves can regrow."
Findings of the study, which will be published in The Journal of
Neuroscience on November 10, are the work of PhD student Ms Yona
Goldshmit, at the University of Melbourne's Centre for Neuroscience and
School of Physiotherapy,
in collaboration with Professor Perry Bartlett, Director of the
Queensland Brain Institute at the University of Queensland and formerly
at the Walter and Eliza Hall Institute of Medical Research.
Professor Galea says "this finding provides an exciting possibility for
overcoming spinal cord injuries and promoting nerve growth. Increased
EphA4 expression has already been observed in primates following spinal
cord injury and most likely plays a similar role in humans.
"There is now a real prospect of effectively promoting the regrowth of
damaged spinal cord nerves after injury in humans by developing drugs
that can block the EphA4 molecule and stop the scar from forming in the
first place."
More information about this article:
Elaine Mulcahy
Media Liaison
emulcahy@...
8344 0181
Ann Turnley
Centre for Neuroscience
(03) 8344 3981
0412 704 157
turnley@...

I am now jyn_dlr@...

now its time to rest. I will continue to keep in email contact with you from my
Jayne@... free email acount.
These are wondrous times & it was because the digital revolution that I've
had any contact with you all.
I don't know the final resoution to my aide dilemma but I can nam a few NYS
nurses whose allegiance has been to the bureucracy which pays their
salaries rather than to the the health of one New Yorker. I'm ready with
several names I feel NYS could do without positions in the bureaucracy.
However I don't expect to be aske for them. :(
More's the pity.
I had thought this it'd be so simple a thing, hiring the aide of my choice .
. .
but I hadn't counted on the resistance from the medical bureacracy to releaing
Fannie to me. Fannie is a very good aide and I don't blame for trying to hold
on to her. But I do resent they're trying to us the CDPAP to hold the aide I'd
requsted over a year ago. What 've learrned of CDPAP is that th on true
CDPAP is handled by my local Center for Independent Living and that they
are the only place to go to hire professional aides.
I had used Jamie Shapiro of the Able Home Health agency which I use to
provide my aide services. Jamieis someone who'd been in the local news as
an agency head interested in Medicare reform so I accepted her guidance in
completing the proper forms to secure Fannie's return.
I'm imaging picket signs bearing the message "Clone Fannie", a poignant
message for this age of biotechnology.

Adapted from The Daily Motivator

Monday, November 22, 2004

Frustrated no more

There is nothing that makes you frustrated. Any frustration you experience is the result of your own choice to react with frustration.

There is nothing that makes you annoyed. Any annoyance you experience comes about because you have decided to be annoyed.

You can choose to be annoyed, frustrated, angry and spiteful. You can also choose not to be.

Imagine how effective you could be if there was nothing that annoyed you! This level of effectiveness is yours to choose right here and now.

Many things will happen in your world today. You can let them get to you, annoy and frustrate you, or you can choose to follow your own path.

You have the power to be free of frustration and annoyance in order to accomplish and enjoy life. Choose this freedom today.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.

http://greatday.com/motivate/index.html

[INLINE]
~Joyce [INLINE]
A wise man is able to adapt to the surprises of life as water to the decanter it is poured in.

Hi, everyone,
Steve and I have finally joined the fast-paced world and now have DSL.
Our address is now ladypeace50@.... The old addy will be ok for at
least another week. Steve's Hotmail addy still works.
We are going to the coast for the weekend. I will have a laptop, but I
don't know whether I can get or send emails. We'll be back on Sun. so
we shouldn't miss out on much.
Happy Thanksgiving everyone!
Irene

[INLINE]

A frog goes into a bank and approaches the teller. He can see from her nameplate that her name is Patricia Whack.

"Miss Whack, I'd like to get a $30,000 loan to take a holiday."
Patty looks at the frog in disbelief and asks his name. The frog says his name is Kermit Jagger, his dad is Mick Jagger, and that it's okay, he knows the bank manager.
Patty explains that he will need to secure the loan with some collateral.
The frog says, "Sure. I have this," and produces a tiny porcelain elephant, about an inch tall, bright pink and perfectly formed.
Very confused, Patty explains that she'll have to consult with the bank manager and disappears into a back office.
She finds the manager and says, "There's a frog called Kermit Jagger out there who claims to know you and wants to borrow $30,000, and he wants to use this as collateral."
She holds up the tiny pink elephant. "I mean, what in the world is this?"
(you're gonna love this)
(its a real treat)
(a masterpiece)
(wait for it)
The bank manager looks back at her and says...
"It's a knickknack, Patty Whack. Give the frog a loan. His old man's a Rolling Stone."
(You're singing it, aren't you? Yeah, I know you are........)
Never take life too seriously! Come on now, you grinned, I know you did!!!

Give The Frog A Loan
[INLINE]
Have a great day

------- End of Forwarded Message -------

I added it, but yours also went through, so I'll delete mine.
Irene

LETTERS

Letters

November 21, 2004

Antegren allows fewer injections
One salient point your article (''Change of habit might be key to drug's success," Nov. 15) failed to mention about Biogen's ability to successfully market Antegren: the potential for multiple sclerosis patients to loose the bonds of daily or weekly painful injections with unpleasant side effects and replace them with a once-monthly treatment with side effects. Next to the drug's overall effectiveness I believe this to be a significant marketing tool because it is the carrot dangling before my daughter. It is the future of MS treatment we are pinning our hopes on.

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My daughter is 25. She was diagnosed with MS before she was 21. In the 4 years she has had MS she has had four major recurrences. She has been on Copaxone, Betaseron, and now Avonex. Yet her MS is considered mild and she holds down a rather stressful job and recently got married. In other words, her life is pretty normal, except for the MS.

To a certain extent she has to plan her week around what days her husband administers her Avonex because she knows she will not feel 100 percent for the following 12 hours. Perhaps because she works in healthcare the idea of spending an hour a month hooked up to an IV does not faze her in the least. Trade weekly shots for a once-monthly inconvenience? She has already told her neurologist she expects to be her first Antegren patient.

Barbara Kautz, RN

York, Maine

Organization still strong after 14 years

I'm leaving the group for awhile. Never fear, in the word of our esteemed
governor of CA, I will be back.
As you can seeI'm getting quite testy.
See you all in awhile,
Jayne

Trial Information
Summary: A Phase II study to look at a drug called BMS 188667 given to
patients with Relapsing Remitting MS.
BMS 188667 is an experimental drug that is not approved by the Food and
Drug Administration (FDA). This is being used for the first time in patients
with
MS. Studies suggest this drug blocks activation of a special cell called T
cells.
This is a 10-month double blind placebo-controlled trial. This means that
neither the subject or study doctor will know about what drug or a placebo(a
drug without active ingredients) subjects are receiving.Subjects will receive 9
intravenous (into the vein) infusions and 10 MRI (Magnetic Resonance
Imaging) scans of the brain. There are 16 visits over the course of the study.
Dr. Fred Lublin is the physician invloved with this research project.
No Compensation Provided
Patient Inclusion/Exclusion Criteria:
* Relapsing Remitting MS
* Males and Females 18-55 Years old
* 1 Relapse in past 2 years
* Must Meet Eligibility Criteria
* Current therapy to treat MS (i.e., interferons or glatiramer acetate)
* Pregnancy, breast feeding or desire to become pregnant
Contact:
Michele Weber, Research Coordinator
Mount Sinai Medical Center
One Gustave L. Levy Place
New York, NY 10029
Telephone: 212-241-4264
Fax: 212-241-9771
Email: michele.weber@...
Provided by
MapQuest
If you would like to learn more about participating in this study, please send
an e-mail message using the form below.
Name:
Address:
City:
State:
Zip:
Phone:
Email address:

and I'm having problems. Would someone else please try to add the
Consortium of Citizens with Disabilities website to our links?
Jayne

Dear Jayne,]
I really miss Paul Jones's postings; I haven't heard a thing either. Stay well.
Hilary

Study Finds Different Multiple Sclerosis Prevalence According to Ethnic
Group in Israel
ANA:
By Marvin Ross
TORONTO, ON -- October 5, 2004 -- An evaluation of multiple sclerosis
(MS) rates amongst Israel's various ethnic groups suggests that
lifestyle is an important risk factor for the development of this
disease.
The findings were presented here October 4th by Milton Alter, MD, PhD,
Department of Neurology, Hahnemann University Hospital, Philadelphia,
Pennsylvania, at the American Neurological Association 129th Annual
Meeting.
Dr. Alter said that Israel is a perfect population laboratory because
the country has well equipped hospitals, medical care is available to
all residents at a low cost, there is detailed census data available,
there has been a national MS registry since 1950, and the MS research
group obtains data from all hospitals in the country.
An evaluation of age adjusted MS prevalence per 100,000 population on
December 31, 2000 found significant differences among the various groups
in the country.
The highest rates of MS were found in both Israeli born and
European/American Jews at 56.7 and 54.8 per 100,000 population,
respectively. Arab Christians had a rate of 39.4 but Jews of African or
Middle Eastern birth had a rate of only 26.1/100,000. The groups with
the
lowest rates were Arab Moslems (13.1), Druze (8.9) and Bedouins (9.0).
Given that the geoclimatic conditions are the same for all groups, the
conclusion that the authors came to was that lifestyle factors may be
the reason for the difference in rates, particularly given the
difference between Israeli and western Jews versus Jews from the Middle
East, and the
differences between Christian Arabs and others.
"Western lifestyle may account for this difference," the study authors
concluded, and suggested that the age at which childhood infections are
acquired may be a factor to the development of MS. They propose that
differences among the various ethnic groups may help identify the
environmental factor or factors that influence MS risk.
This study was supported by the National Multiple Sclerosis Society.
[Presentation title: "Multiple Sclerosis Prevalence in Israeli Ethnic
Groups: Evidence That Lifestyle Influences Risk." Abstract 77]
http://tinyurl.com/3q2ta
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256F2400654C7F?O\
penDocument&id=48DDE4A73E09A969852568880078C249&c=Multiple%20Sclerosis&count=10

Prevalence of primary headaches in people with multiple sclerosis.
D'Amico D, La Mantia L, Rigamonti A, Usai S, Mascoli N, Milanese C,
Bussone G.
C. Besta National Neurological Institute, Milan, Italy.
damicodo@...
The aim was to investigate the lifetime prevalence of headache and
primary headache (diagnoses according to International Headache Society
criteria) in multiple sclerosis (MS). The relationships between headache
and clinical features of MS and MS therapy were also investigated. We
studied 137 patients with clinically definite MS; 88 reported headache,
21 of whom developed headache after the initiation of interferon. The
prevalence of all headaches in the remaining 116 patients was 57.7%.
Migraine was found in 25.0%, tension-type headache in 31.9%, and cluster
headache in one patient. A significant correlation (P = 0.007, Fisher's
exact test) between migraine and relapsing-remitting MS was found.
Primary headaches are common in MS patients. Further studies are needed
to clarify the mechanisms underlying this association, particularly the
association between migraine and relapsing-remitting MS, and the role of
interferon in the development of new headache.
PMID: 15482362 [PubMed - in process]
http://tinyurl.com/5qwof
http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&refid=2&id=48DDE\
4A73E09A969852568880078C249&c=&newsid=8525697700573E1885256F30003490BA&u=http://\
www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list\
_uids=15482362&ref=/news/content.nsf/SearchResults?openform&Query=multiple%20scl\
erosis&so=date&id=48DDE4A73E09A969852568880078C249

Adapted from The Daily Motivator

Saturday, November 20, 2004

Relate to the goal

Before you consider difficulties you can consider the rewards you will enjoy after getting past them. Before looking at the effort you must put forth you can look at what you have as an opportunity to accomplish.

Yes, there are obstacles that stand in front of you, and the most effective way to get through them is with a meaningful, compelling reason.

Imagine the other side of the mountain. It is the strength of your vision that will carry you over it.

When your heart is in the effort you will find a way to prevail against whatever may block your path, and you will be fully and effectively engaged every step of the way.

See, hear, feel and taste the end of the journey before you even begin. The more vividly you visualize and relate to the goal the more energy you will have to get there.

There really is a path from here to there despite the difficulties. Connect solidly with your purpose for going, and you will surely complete the journey.

-- Ralph Marston

Copyright ©2004 Ralph S. Marston, Jr. All rights reserved.

http://greatday.com/motivate/index.html

[INLINE]
~Joyce
Acknowledging the good things in your life each day opens the door for more.

Center for Disability Rights
412 State Street
Rochester, NY 14608
July 17,
2004 \

Contact: Chris Hilderbrant (585) 530-7117
For Immediate
Release \

Bruce Darling (585) 370-6690
Disability Activists Block Intersections, Secure Initial Victory
Thirty-seven Rochester-area disability rights activists joined ADAPT, a
national disability rights group, today in protest at the National Governors
Association (NGA) conference in Seattle, Washington. After a delegation of
ADAPT members were not allowed to deliver ADAPT's proposed resolution
(copied below) to the Governors attending the conference, ADAPT members
blocked several busy intersections surrounding the National Governors
Association's hotel, demanding that the NGA introduce and pass the
resolution.
For eight years ADAPT has been advocating that the NGA address the
institutional bias in the long term care system. ADAPT had tried for several
weeks to deliver a proposed resolution in support of community-based
services and ending the institutional bias of long-term care, but the NGA has
refused to even discuss the issues with ADAPT. Late yesterday (July 16th),
the NGA offerred to meet with ADAPT. This morning, Matt Salo, an NGA staffer
met with the full ADAPT group, but stated he could not agree to get ADAPT's
resolution introduced to the NGA. "Because they ignored us, we decided to
bring the message to them in a way that they simply could not ignore," said
Gene Spinning of Rochester ADAPT.
The ADAPT group sent 50 representatives with the proposed resolution to the
NGA hotel. When police refused to allow ADAPT to deliver the materials to the
NGA, the group was joined by 450 additional ADAPTers who blocked three
intersections surrounding the Westin Hotel. After five hours of protest, ADAPT
negotiators were successful in securing a commitment from the Governor of
Pennsylvania to introduce ADAPT's resolution to the NGA during the
conference on Monday, July 18, 2004. "The introduction of the resolution
tomorrow is an excellent step foward," said Bruce Darling of Rochester
ADAPT, "but ADAPT will be here to make sure this is not just lip service."
On July 18th, ADAPT will be holding a press conference to release its list of
the Ten Worst States related to Home and Community Service Options.
The Resolution
Dear Friends of Community Services:
This is a resolution that ADAPT activists are proposing that the NGA members
vote on and pass while they are in Seattle for their national conference, July
17th-19th.
Over two million people with disabilities, old and young, withphysical, mental
and/or cognitive disabilities are warehoused in nursing homes and other
institutions because of the lack of home and community services.
ADAPT believes the NGA and each individual Governor play an integral part
in the reforming of this institutionally biased long term care system.
The ADAPT Community
RESOLUTION
Commitment To Community-based Long Term Care Services and Support
WHEREAS millions of people with disabilities and older Americans currently
need or will need long term services and supports to live in the community
and this number is expected to grow at a rapid pace over the next three
decades; and
WHEREAS the current long term care system is fragmented, overly
medicalized, bureaucratic, expensive with an institutional bias that
unnecessarily forces people with disabilities and older Americans in nursing
homes and other institutions; and
WHEREAS the Supreme Court in the Olmstead vs. LC & EW decision ruled in
1999 that people have the right to services in the most integrated setting; and
WHEREAS the American public overwhelmingly supports long term care
services and supports be provided in their own home and communities; and
WHEREAS the reform of the long term care (services and supports) system
must be a cooperative partnership between the federal government, the
states and the disability/older community,
THEREFORE BE IT RESOLVED that the National Governors Association,
NGA, by a vote of the membership and the Executive Committee supports the
following:
A) The current long term services and support system has an institutional bias
that must be reformed through a cooperative effort by the federal government,
the states and the disability/older community including those who use
services; and
B) The long term services and support system must include the principles that
home and community services and supports are the first priority and that
support services should be provided in the most integrated setting; and
C) No person with a disability or older American should be forced into a
nursing home or other institution because of the lack of integrated home and
community options; and
D) People with disabilities and older Americans must have full inclusion in the
design, implementation and review of the long term services and support
system; and
BE IT FURTHER RESOLVED that the NGA supports the passage and funding
of the Medicaid Community Attendant Services and Supports Act, MiCASSA
(currently S971 - HR 2032) and legislation that includes the Money Follows
the Person initiative (currently S.1394 - HR 1811); and
BE IT FURTHER RESOLVED that the NGA work with the individual states to
assure that the Supreme Court's Olmstead decision is aggressively
implemented and that the measure of this implementation be, in a year, how
many people have gotten out of nursing homes and other institutions and how
many people have been diverted from nursing homes and other institutions;
and
BE IT FURTHER RESOLVED that the NGA work with the states to assure that
any 1115 waivers submitted by a State should have statewide public hearings
before development and submission to HHS, and that the 1115 waiver
process should not be used to undercut current community Medicaid services
and federal protections; and
BE IT FURTHER RESOLVED that the NGA supports reform of the long term
services and support system that does not result in block granting, capitating
or otherwise reducing or eliminating funding to the states or the removal of the
current national Medicaid protections.
Passed this day

I meant to say th ActiveFrever website has has been added to our links.
Jayne

Activeforever.com

I appear to have lost contact with him. Does anyone have word on him?
Jayne

& still trying to unsnarl my cyber difficulties. This is an area I feel the
NMSS
has been remiss in. These are days of increasing disability empowerment an I
believe the NMSS should play a role in aiding its members with this
technology. Jus one woman's opinion.
Jayne

Anxious for Cures, Grant Givers Turn
More Demanding
To Speed Discovery Process, Scientists Must Share Data
As Condition for Funding An Ex-CEO Tackles His Illness
By SHARON BEGLEY
Staff Reporter of THE WALL STREET JOURNAL
Trent Watkins had just made an extraordinary discovery. The young graduate
student had identified a rogue enzyme that could be a key to treating multiple
sclerosis, the neurological disease that can leave victims blind and unable to
walk.
If Mr. Watkins had been conducting science-as-usual, no outsider would have
learned of his "eureka" for years, as it wended its way through scientific
review to publication in a top journal. Instead, within days of the finding, his
lab shared the data with four research groups at other universities. Two of
them quickly set to work on blocking the enzyme in mice and human brain
tissue to see if that would protect the nervous system.
"My heart almost stopped, it's so against how we usually do things," says Ben
Barres, a Stanford University neurobiologist and head of the lab where Mr.
Watkins is pursuing his doctorate. "Normally, the kind of work we do would go
for seven or eight years before moving to an animal model, which would take
several more years before moving to human tissue."
The Stanford group reached out to other scientists for one reason: It was a
condition of a grant from a new research foundation that is supporting the
lab's work. Without assurance that Prof. Barres and his colleagues would
quickly share important findings with other scientists, the foundation wouldn't
have written the check.
The requirement reflects a growing movement among patient-advocacy and
other private funding organizationsranging from the powerhouse Juvenile
Diabetes Research Foundation to newcomers like the Michael J. Fox
Foundation for Parkinson's Researchto shake up the structure and culture
of biomedical research. Fed up with the glacial pace at which new discoveries
become medical treatments, the groups are insisting that the scientists they
fund swear off secrecy in favor of collaboration.
Traditionally, academic biomedical researchers get federal grants and tenure
by working largely alone toward basic discoveries, usually collaborating only
with colleagues in their own labs. Now some are calling that model flawed.
Despite the flood of new knowledge in the biosciences, there has been "a
slowdown instead of an expected acceleration in innovative medical
therapies reaching patients," says Janet Woodcock, an acting deputy
commissioner at the Food and Drug Administration.
What's needed, many agree, is more "translational" research to turn
fundamental discoveries into practical treatments. And funding organizations
are realizing that translational research is by its nature collaborative. A lone
genius might find a disease-causing gene, for example, but turning that into a
cure requires biologists to figure out what the gene does and chemists to work
with them designing drugs to block that action.
Even the National Institutes of Health, the primary funder of basic biomedical
research in the U.S., is beginning to put more weight on translational research
as part of a "road map" unveiled in September 2003. In addition to funding
projects scientists dream up on their own, the NIH is setting more of its own
big goals and directing scientists to work toward them.
There isn't any assurance that the new strategy will work. It may not shorten
the time required for clinical trials of new drugs or devices, for instance,
which
typically take a decade or more. Many scientists say the traditional system is
working fine. Siphoning moneypublic or privateaway from basic research
and setting direction from above could choke off discoveries that underpin
every treatment and drug now in use, they say. It could also stifle the
independent spirit that leads talented people to academia in the first place.
But funders say they're tired of writing checks for research that doesn't lead
anywhere. Five years after the juvenile-diabetes foundation raised and
distributed millions of dollars for basic-science research in a 1990s campaign
called "The Only Remedy Is a Cure," it had no real clinical progress to show
for the money. In one instance, a foundation-supported scientist discovered a
gene that increases the risk of developing juvenile diabetes. All well and
good, says Richard Insel, the foundation's executive vice president for
research, "but then the scientist, being a geneticist, went and looked for
another risk gene." The first discovery just sat there in a scientific paper.
"We used to leave it to chance that someone would pick up on the discovery
and advance it," says Dr. Insel. That has seldom happened. The foundation
distributes more than $100 million a year in research grants but the scientists
it funds haven't found a cure for an illness that afflicts at least 1.3 million
adults
and children in the U.S.