===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS
Digest #979 (12 January 2002)
==
==
==
== ------ Amyotrophic Lateral Sclerosis (ALS)
==
== ------ Motor Neurone Disease (MND)
==
== ------ Lou
Gehrig's disease
==
==
------ maladie de Charcot
==
==
==
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== are welcome (and invited) to join. The ALS Digest is
==
== published (approximately) weekly. Currently there are
==
== 5100+ subscribers in 70+ countries. Please be advised, ==
== the editor is not a medical doctor and the Digest is
==
== not peer reviewed. This newsletter is not intended to
==
== provide medical advice on individual health matters.
==
== Any such advice should be obtained personally from a
==
== physician.
==
== To subscribe, to unsubscribe, to contribute notes,
==
== etc. to ALS Digest, please send e-mail to:
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==
==
==
== Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA ==
===============================================================
== Back issues of the ALS Digest are available on-line at: ==
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== http://health.oldeman.net
==
===============================================================
CONTENTS OF THIS ISSUE:
1 .. Elisabeth Targ Web Page
2 .. anyone else diagnosed with a stroke?
3 .. A Marvel of Science, Hawking Turns 60
4 .. Important Dapsone Update
5 .. ALS Society of Canada News
6 .. A Ribbon to Remember
7 .. ALSA Family Caregiver Training
8 .. More evidence of apoptosis prevention by Ginko biloba extract
(1)
=====
Elisabeth Targ Web Page
==========
>From: "Mary Reed" marycath2002@hotmail.com
Date: Thu, 10 Jan 2002
Even though I don't agree with the approach of Elisabeth Targ of CMRI,
I earlier reported that there was no web page associated with the
organization. This was in error. I found it through the sponsoring
health network. The web page is:
http://www.cpmc.org/services/ihh/about/cmri.html
Brad Reed
(2)
=====
anyone else diagnosed with a stroke?
==========
Date: Fri, 11 Jan 2002
>From: PAUL S TROYANEK bossjo@juno.com
My husband, Paul has been diagnosed with Als since last Jan 2001.
He is bed ridden and does not have long to live. What I'd like to know
from anyone is if they were diagnosed with a stroke first like Paul was.
He went into emergency in Oct 1999, they thought he had a stroke even
though there were no signs of stroke on the MRI that he had. Then he
was sent to a cardiologist, they found a hole that hadn't closed as an
infant and decided that was the cause of the stroke. Paul then had open
heart surgery to repair this hole and was told he would be 100% better
and could go back to work in 6 weeks. The neurologist that diagnosed the
stroke didn't ask if anyone in our family had ALS. Paul's cousin had
died from it 10 years earlier. His symptoms were weakness on the right
side and uncontrollable laughter. The emergency room Dr. really thought
Paul was on drugs and said so in a round about way. Here is what I'm
looking for. Has anyone else been diagnosed with a stroke? Have you
been able to sue. The lawyers I've contacted said since the diagnosis
is death with ALS I cannot sue because he had an operation he didn't
need. Can anyone help me.?? bossjo@juno. com
(3)
=====
A Marvel of Science, Hawking Turns 60
==========
>From: "Kyle Hahn" kyle@kylehahn.com
Date : Thu, 10 Jan 2002
January 9, 2002
A Marvel of Science, Hawking Turns 60
By DENNIS OVERBYE
AMBRIDGE, England, Jan. 8 - There is no crying in physics, where even
the best of friends can call each other's work rubbish, and the most
beloved theories are coolly thrown out when experiments contradict them.
But there was emotion tonight in the high-ceilinged hall of Gonville
and Caius College here when a butler opened a door and a Marilyn Monroe
impersonator slithered in, wearing a pink dress and singing "I Want to
Be Loved by You" in a whispery voice to Dr. Stephen Hawking, the
Cambridge University cosmologist and best-selling author. Dr. Hawking
was lolling in a wheelchair, his face split by a huge grin, while some
200 hard-core physicists, their families and friends roared and cheered
with laughter, and then joined in singing "Happy Birthday."
"Marilyn and I go way back," Dr. Hawking said in the android voice of
his computerized voice synthesizer, alluding to a scene on the
television show "Star Trek: The Next Generation," in which a space
warp
causes Monroe to appear on his knee.
In his nearly 40 years as a working physicist, Dr. Hawking has led his
colleagues in the exploration of black holes - the gravitational traps
that swallow everything, even light - as well as theories about the
origin of the universe, but one of his more astonishing achievements
may simply be that he has survived.
Today, 39 years after he was given a death sentence, a diagnosis of
amyotrophic lateral sclerosis, or Lou Gehrig's disease, Dr. Hawking
turned 60, a landmark age for a scientist, and one that outstrips by
decades the life expectancy for most people with the condition.
Accordingly, his colleagues and students, an all-star cast of
physicists, have gathered here for four days of workshops and parties.
The week will be capped by a day of public lectures, including one by
Dr. Hawking himself.
The 60th birthday is an event "which most of us would, 35 years ago,
have laid astronomical odds against witnessing at all, let alone with
sustained achievements to celebrate," said Dr. Martin Rees, a
cosmologist at Cambridge University and Britain's Astronomer Royal, who
has known Dr. Hawking since the early 1960's.
In a memoir on his Web site, Dr. Hawking recalls dreaming after his
diagnosis that he was going to be executed. But after watching a young
boy in a nearby hospital bed die of leukemia, he decided that he himself
was not so bad off, yet. He went on to marry and have three children
while his career took off and black holes became all the rage.
His most important work came in 1974, physicists say, when he discovered
that black holes are not really black but could radiate their mass-
energy away and explode. That notion is now at the center of efforts to
unite Einstein's general theory of relativity, which describes the
gravity that shapes the cosmos, with the quantum chaos that lives inside
it.
For years, the whir of Dr. Hawking's wheelchair, creeping down an aisle
of a darkened auditorium, has invested even the dreariest astrophysical
gatherings with a gladiatorial drama. His latest book, "The Universe in
a Nutshell," like a predecessor, "A Brief History of Time," has
climbed
the best-seller lists.
Not everyone has been star struck. In 1999, his former wife, Jane
Hawking, published a tell-all memoir, "Music to Move the Stars," which
described the disintegration of their relationship under the pressures
of fame and disability. Dr. Hawking left her in 1990 and later married
his nurse, Elaine Mason.
Dr. Hawking's colleagues explain his ability to frustrate grim
predictions by pointing to his iron constitution and iron will.
"He is a person of such will, such intellectual strength," said Dr.
Andrei Linde, a Stanford physicist who met Dr. Hawking in Moscow in the
late 1970's. "It all meshes together."
That determination transcends science, said Dr. Linde, who recalled Dr.
Hawking speeding dangerously down Dr. Linde's steep driveway during a
visit to California once.
Dr. Hawking himself almost didn't make his own party. On the Friday
after Christmas, according to his friends, he lost control of his new
Quantum Jazzy wheelchair and crashed into a wall. The wheelchair toppled
and the fragile physicist fell, banging his head and breaking a femur.
He was taken to the hospital, where a metal plate was installed, Dr.
Rees said.
Apprised of this event, Dr. Linde said: "He's consistent. Exactly what
I told you."
Sunday night, at the symposium's opening reception, the guest of honor
was there, sporting a bruise. Since a tracheotomy in 1985, Dr. Hawking
has spoken only via his computer.
Dr. Hawking turned to the front of the crowd and clicked a control
button. "I'm so pleased to see you all," he said. "It is
wonderful that
nearly everybody who was invited was able to come. It shows there are no
boundaries in theoretical physics or in friendship."
(4)
=====
Important Dapsone Update
==========
Date : Fri, 11 Jan 2002
>From: "Rebecca Heidgerd" rheidgerd@als-tdf.org
Important Dapsone Update from ALS Therapy Development Foundation
ALS Therapy Development Foundation has had close contact with nine
patients taking Dapsone while under a physician's care. All of the nine
patients experienced anemia, and four experienced significant drops in
blood oxygenation levels. In addition, three of the patients ALS-TDF
tracked developed pneumonia that required hospitalization, although it
is unknown whether this was a direct effect of Dapsone.
The side effects mentioned above are occurring at a much higher rate
than normal with patients on Dapsone and therefore suggest a possible
interaction between the drug and ALS.
Due to the potential danger of both the anemia and the possible
relationship to pneumonia, patients should refrain from taking Dapsone
until more concrete information and studies are available. ALS-TDF is
now looking into other drugs with similar structures that will not have
the blood side effects of Dapsone.
The data supporting the potential use of Dapsone in ALS came from an
ALS-TDF mouse study that showed Daspone, a leprosy drug, extended the
life of the SOD mouse by 5%.
ALS-TDF earlier reported that Dapsone, a drug used to treat leprosy,
showed significant life extension in the SOD mouse model. A complete
data analysis is now available, based on the Foundation's first study
with Dapsone.
Please visit www.als-tdf.org <http://www.als-tdf.org>
for a more
detailed summary.
Rebecca Heidgerd
Communications Coordinator
ALS Therapy Development Foundation
44 Glen Ave
Newton, MA 02459
617.796.8826 V
617.796.9652 F
www.als-tdf.org
(5)
=====
ALS Society of Canada News
==========
>From: "Susan Graham Walker" sgw@als.ca
Date : Fri, 11 Jan 2002
Welcome to ALS Society of Canada News.
This e-mail list is designed to provide information and announcements of
interest to the ALS network in Canada - people with ALS, families,
caregivers, supporters and donors, the research and health care community,
ALS Society volunteers and interested Canadians.
All are welcome to join.
To subscribe, to unsubscribe, to contribute items, please send e-mail to:
sgw@als.ca
CONTENTS OF THIS ISSUE:
1. COAST TO COAST
2. STAFF CHANGE
3. ALS SOCIETY OF CANADA AWARDS
4. FEBRUARY VOLUNTEER CONFERENCE
1. COAST TO COAST
The latest edition of the ALS Society of Canada newsletter, Coast to
Coast is available on the ALS Society web site -
http://www.als.ca/newsletters.asp
In this issue: the latest research competition announcement, two
personal essays on volunteering in the ALS community, the opening of
the first Canadian ALS hospice and four pages of stories and pictures
from the WALK TO D'FEET ALS.
2. STAFF CHANGE
It is with profound regret that the ALS Society of Canada announces that
HELENE VASSOS, Director of Development, has accepted a similar position
with the Don Mills Foundation for Senior Citizens beginning in February.
In her six years with the ALS Society of Canada Helene has contributed
to almost every area of our work, including acting Executive Director,
support to program initiatives and in all areas of organizational
development. While growing and managing a highly successful direct
mail project that has raised $1.2 million during her tenure, she has
also begun to accomplish our goal of diversifying our revenue sources.
Whether it is working with the Friends of Tim E. Noel and the Tim E Noel
Golf Outing, Elizabeths Concert of Hope, or in establishing the highly
successful Walk to DFeet ALS, Helenes has forged lasting relationships
with those who share our mission to find a cure for ALS. We recognize
this as among her most valued contributions to the work of the ALS
Society of Canada.
The search has begun to find a new Director of Development to continue
Helenes legacy. The Management Team and Development Department staff
are on hand during the interim to support all our essential development
activities.
3. ALS SOCIETY OF CANADA AWARDS
Is there a program or someone you know in the Canadian ALS network
deserving of recognition?
The ALS Society of Canada is accepting nominations for the 2001 AWARDS.
There are a number of categories:
Myra Rosenfeld Volunteer Award,
William Fraser Leadership Development Award,
Honorary Life Member
Program awards for Excellence in
Support Services,
Fundraising,
Public Awareness
Advocacy.
For more detail on the criteria and an application form, please contact
the ALS Society of Canada or go to our web site www.als.ca.
Until the next time. Susan
Susan Graham Walker
Director of Communications and Program
sgw@als.ca
800-267-4257
416-497-1256 fax
416-497-2267 ext 208
alscanada@als.ca
www.als.ca
265 Yorkland Blvd., Suite 300, Toronto, Ontario M2J 1S5
(6)
=====
A Ribbon to Remember
==========
>From: "Kyle Hahn" kyle@kylehahn.com
Date : Tue, 8 Jan 2002
A RIBBON TO REMEMBER
Dianne was a stay-at-home Mom raising her teenage daughter in Salinas,
CA when she learned of her diagnosis, in September 1996.
Dianne was a member of the then Prodigy.com online community, and like
so many PALS with internet access, immediately set out to find as much
information as she could about ALS, Amyotrophic Lateral Sclerosis, or
Lou Gehrig's Disease.
The amount and range of information less than 4 years ago, was not near
what is available today, but Dianne did find an internet chat on Prodigy
devoted to the topic ALS. It was there that she met and befriended New
Yorker, Laurel Pieper. Laurel's brother, Eric Pieper had been diagnosed
with ALS.
The two of them realized the level of public awareness of this
devastating disease was far from adequate. It seemed that unless one
had a family member or close friend with ALS, they were unaware of it
and its consequences. There seemed to be no official ALS Awareness
Ribbon to be found. Told that a blue ribbon was being used, they both
discovered blue was already earmarked for at least two other causes.
ALS, commonly known in the U.S. as Lou Gehrig's Disease needed
something distinct to jog the memories of those who'd forgotten Gehrig
had suffered and died of ALS in 1941 when he was only 37. And to teach
millions of others about this disease and how urgent it is to find a
cure.
Laurel made the connection. She came up with the idea that a uniquely
distinct ribbon could be a navy pinstripe, in remembrance of Gehrig's
Yankee uniform. Dianne loved the idea and set about searching high and
low for navy pin-stripe ribbon materials.
Di's search was unsuccessful, but this was too important. She knew that
this first step in raising ALS Awareness could have resounding effects,
therefore she refused to give up. Asking friends and colleagues, she
came to discover that such a ribbon could be made fairly reasonably
through a foil stamp process. Without hesitation, Di ordered a thousand
to be made and paid for them herself.
Through her friends, her ALSA support group and the ALS March of Faces,
she was able to begin distributing them. The pin-stripe ribbon was
embraced whole heartedly by the ALS community, just as Dianne had
seized upon Laurel's concept.
The ALS March of Faces continues today to help keep the ALS Awareness
Ribbon in circulation. A contribution to defray costs and assist the
patient-driven organization dedicated to ALS Awareness, can be made to
obtain ribbons by visiting http://www.march-of-faces.org
Dianne and her daughter, Lindsey moved to Cape Cod, MA to be closer
to her family but she eventually returned to her beloved Bay Area and
dearest friends. She continued to fight valiantly against this raging
disease until she found her peace on June 26, 2001.
Our Gratitude endures... Our Hope is endless.
Kyle G. Hahn, PALS (Person with ALS)
President
The ALS March of Faces
402 Sal Blvd., Suite "B"
Trenton, OH 45067-1396
(513) 988-0796=20
(513) 988-0942 (Fax)
Federal Tax ID# 31-1597037
http://www.march-of-faces.org/
als *AT* march-of-faces.org
(7)
=====
ALSA Family Caregiver Training
==========
>From: "Florida ALSA Patient Services" cbright@als-florida.org
Date : Thu, 10 Jan 2002
The ALS Association Florida Chapter Family Caregiver Training at Hope
Hospice in Ft. Myers has been re-scheduled for February 9, 2002. To
register call Christine Bright at 1-888-257-1717, prompt 2# or
813-996-0369.
(8)
=====
More evidence of apoptosis prevention by Ginko biloba extract
==========
Date : Tue, 27 Nov 2001
>From: Will Huben whubben@earthlink.net
Age-related increase of oxidative stress-induced apoptosis in mice
prevention by Ginkgo biloba extract (EGb761).
J Neural Transm 2001;108(8-9):969-78
Schindowski K, Leutner S, Kressmann S, Eckert A, Muller WE.
Department of Pharmacology, Biocenter, Johann Wolfgang
Goethe-University, Frankfurt am Main, Federal Republic of Germany.
Schindowski@em.uni-frankfurt.de
Enhanced apoptosis and elevated levels of reactive oxygen species
(ROS) play a major role in aging. In addition, several
neurodegenerative diseases are associated with increased oxidative
stress and apoptosis in neuronal tissue. Antioxidative treatment has
neuro-protective effects. The aim of the present study was to
evaluate changes of susceptibility to apoptotic cell death by
oxidative stress in aging and its inhibition by the antioxidant
Ginkgo biloba extract EGb761. We investigated basal and ROS-induced
levels of apoptotic lymphocytes derived from the spleen in young (3
months) and old (24 months) mice. ROS were induced by
2-deoxy-D-ribose (dRib) that depletes the intracellular pool of
reduced glutathione. Lymphocytes from aged mice accumulate apoptotic
cells to a significantly higher extent under basal conditions
compared to cells from young mice. Treatment with dRib enhanced this
difference, implicating a higher sensitivity to ROS in aging.
Apoptosis can be reduced in vitro by treatment with EGb761. In
addition, mice were treated daily with 100 mg/kg EGb761 per os over a
period of two weeks. ROS-induced apoptosis was significantly reduced
in the EGb761 group. Interestingly, this effect seemed to be more
pronounced in old mice.
PMID: 11716149
Will Hubben whubben@earthlink.net
=== end of alsd 979 ===