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Article:
Leaders with Disabilities May Apply for Award Up to three people with
disabilities who are emerging as leaders in their respective fields will
each receive $10,000 to help them continue their progress as leader. They
will also have an opportunity to meet and network with national disability
leaders at the American Association of People with Disabilities Leadership
Gala in Washington, DC in early 2004. U.S. residents with any type of
disability are eligible to apply.
SELECTION CRITERIA
An "emerging leader" is defined as someone who has demonstrated leadership
qualities in his/her personal and/or professional life, and who is just
starting to be recognized at a local, regional or national level. Winners of
The Paul G. Hearne/AAPD Leadership Awards must demonstrate all of the
following:
Leadership achievements that show a positive impact on the broad community
of people with disabilities or within their area of disability interest.
Connections they have made between individuals with disabilities and others
in their communities.
A positive vision for the disability community and a continuing commitment
to their leadership activities.
Potential to contribute at a national level. AAPD encourages emerging
leaders with disabilities of any age to apply. Previous awardees represent a
diverse group of people with disabilities aged 11 to 56. Their leadership
activities include: the creation of a newsletter written by and distributed
to mental health consumers and designed to counter the negative images the
media portrays of persons with mental illness; the continuation of efforts
to ensure the passage of important legislation for deaf people and people
with other disabilities; the coordination of the first ever Disability
Mentoring Day in Houston, Texas; the creation of "Women Without Barriers," a
mentoring program for high school-aged girls with disabilities; the founding
of Landmine Survivors Network, the only international organization created
by and for landmine survivors to assist mine victims and their families
worldwide to recover, heal and reclaim their lives; and, the creation and
growth of an organization which places a strong emphasis on motivating women
with disabilities to live life developing who they are and what they want to
become.
APPLICATION INSTRUCTIONS AND PROCEDURES
To be considered for a Paul G. Hearne/AAPD Leadership Award, a candidate
must complete an application and submit it along with a statement of no more
than 700 words that addresses all of the selection criteria and a letter of
commitment from his/her mentor or supportive colleague who is prepared to
work with the applicant in pursuing his/her leadership goals. Applicants
should be aware that if they are selected for an award they will be expected
to promote The Paul G. Hearne/AAPD Leadership Awards program and work with
AAPD to help grow the program. If selected to receive a 2003 Paul G.
Hearne/AAPD Leadership Award, the applicant must also make himself or
herself available to participate in the production of a video highlighting
his/her accomplishments that will be shown at the Leadership Gala.
Applications may be submitted on paper or via e-mail to AAPD@..., or by
audio cassette, or videotape. No faxed applications will be accepted. All
eligible applications will be evaluated by a review team selected by AAPD.
The review team will identify finalists whose applications will be evaluated
by the National Advisory Committee. The National Advisory Committee will
make recommendations to the AAPD Board of Directors who will ultimately
select the
winners. Mail or e-mail applications to:
2003 Paul G. Hearne/AAPD Leadership Awards
AAPD
1629 K Street NW
Suite 503
Washington, DC 20006
phone: (800) 840-8844 (voice/TTY)
phone: (202) 457-0046 (voice/TTY)
e-mail: AAPD@...
Applications must be received by 5 p.m. Eastern Time on Friday, September
26, 2003.
Note: Please limit your application to the completion of
the following information, the 700 word essay that answers
the questions below, and a letter of commitment from the
person you have identified as your mentor or supportive
colleague. AAPD will discard and not consider supplementary
materials.
NAME (as you would like it to appear on your name badge)
TITLE/ORGANIZATION
STREET ADDRESS
CITY/STATE/ZIP
PHONE/FAX
E-MAIL ADDRESS
TYPE OF DISABILITY*
AGE* GENDER* ETHNIC GROUP*
* These questions are optional. We ask that you answer them
so that we can ensure a diverse group of awardees.
In order for us to continue to improve our outreach and
dissemination, please let us know how you heard about this
awards program/and or received the application:
PERSONAL OR PROFESSIONAL REFERENCE
NAME
TITLE/ORGANIZATION
STREET ADDRESS
CITY/STATE/ZIP
PHONE
ESSAY QUESTIONS
What are the most serious barriers for people with
disabilities and how have you addressed them in pursuing
your leadership goals up to this point? Please include
activities you have participated in and describe the ways
they have improved the lives of people with disabilities.
What are your personal leadership goals for the next
five years?
How will the recognition coming from this award and
working with the person you have identified as a
mentor/supportive colleague enable you to become more
effective as a leader?
Application Deadline: 5 PM Eastern Time, Friday, September 26, 2003
For more info. go to ABILITYMagazine's website at:
AAPD AWARD (http://www.abilitymagazine.com/news_AAPDaward.html)
****************************************************
The Author's views reflect only their opinion and do not necessarily reflect
that of The Disability Grapevine.
****************************************************
Do not copy any of these articles without the author's permission.
****************************************************
The Disability Grapevine Online Newspaper Archives are at:

In a message dated 09/19/2003 1:36:38 AM Eastern Daylight Time, salpal@... writes:

In the Newspaper
Front Tue, Sep 09, 03
Novel vaccine could prevent MS, diabetes and arthritis
Dick Ahlstrom, Science Editor, in Salford
Arthritis, diabetes and multiple sclerosis may soon be prevented
with the use of a novel vaccine.
Human trials are to begin next year on the vaccine, which uses part
of a common bacteria to halt the effects of these debilitating
diseases. It acts by helping to re-educate the body's immune system.
Details of the research breakthrough were delivered yesterday to the
annual British Association Festival of Science at the University of
Salford.
Auto-immune diseases such as rheumatoid arthritis occur when tissues
are damaged by the body's own immune system, explained Dr Neil
Williams of the University of Bristol.
"The immune system can go wrong and attack our own tissues," he
said. His approach involves "re-educating the immune system and
putting the controls back in place".
He has already succeeded in doing this in animal models by using a
single protein from a common and harmless form of the bacterium
E.coli.
The results were quite startling, with the majority of test mice
that naturally developed arthritis avoiding the disease altogether.
The risk of developing arthritis fell from 80 per cent of test mice
to just 15 per cent after treatment, he said.
The bacterial protein stimulates an immune system regulator which
dampens down the body's immune response. "It seems that its function
is to suppress chronic inflammatory disease," said Dr Williams. The
regulator was able to shut down the arthritic inflammation being
produced by the immune system.
Meanwhile, the possibility of a vaccine against prostate cancer and,
in time, other cancers was outlined by Dr Mike Whelan, head of
research at Onyvax Ltd, which already has a vaccine in phase II
trials - tests to assess its effectiveness.
The immune system normally protects against mutant cells, but
cancers can develop if the immune system does not respond. Dr Whelan
described how a new vaccine was helping the immune system to
recognise and destroy these cells in advanced prostate cancer.
"We take tumour cells from non-matched individuals," he said. Once
injected into the patient, they are immediately recognised as "non-
self" by the immune system and antibodies are produced against them.
There is enough similarity between the introduced cells and the
patient's own tumour cells to cause the antibodies to also attack
the pre-existing tumour.
Dr Campbell Bunce, head of cellular immunology at Xenova Research,
described the progress on two new vaccines against cocaine and
nicotine addiction. The approach could provide a new way to
help "wean" addicts off these drugs, he said.
The molecules of these drugs were too small for the immune system to
recognise and attack, Dr Bunce said.
Addicts can use these drugs too because of the sensations they
cause, euphoria in the case of cocaine, when they bind to brain
cells. The drugs cannot reach the brain, however, when the
antibodies attack, preventing the drugs from having an effect.
The vaccines could be particularly useful for people who have
already kicked their habit. They may also play a role in blocking
future addiction.
Once vaccinated, a person should get no response from the drugs and
so addiction would be far less likely.
© The Irish Times

Click here: Remedyfind Newsletter

Hi Carol
The substance found in the spinal fluid in MS indicates MS but it can also
indicate other diseases. Therefore it is also important with the MRI and the
patients symptoms.
hugs
Annette
-----Oprindelig meddelelse-----
Fra: lonewarrior@... [mailto:lonewarrior@...]
Sendt: 12. september 2003 01:54

We would like to remind you of this upcoming event.
Jay's birthday!
Date: Friday, September 19, 2003
Time: All Day
Jay can be reached thru email to jay@...

In a message dated 09/18/2003 3:30:09 PM Eastern Daylight Time, davizona@... writes:

Japanese Researchers Uncover How Myelin is Made
Myelin, the fatty material that coats and insulates nerve cells, is
the substance that is damaged as multiple sclerosis progresses. This
damage leads to the neurological problems seen with MS, but the
process of myelination has never been fully understood. Now,
researchers in Japan have discovered how myelin is formed, called
myelination, which may lead to better treatments for MS and,
possibly, to a cure.
The researchers were led by Jin Nakahara, a medical student at Keio
University. He and his coworkers reported that immunological
chemicals appear to play a crucial role in myelination in the human
brain. The team found that the common gamma chain of immunoglobulin
Fc receptors is expressed in oligodendrocyte precursor cells, which
are cells that give rise to oligodendrocytes, which in turn are cells
that produce myelin. The expression of the Fc receptors appears to
trigger the formation of myelin in the human brain.
Most MS researchers believe that a trigger for myelination would be a
substance within the brain. The finding that immunological molecules
plays a crucial role in myelination is surprising. The finding may
help lead to better treatments for demyelinating diseases such as MS
and also may help clarify the relationship between immune processes
and the brain.
The research was reported in the journal Cell Development.
Source: NewsEdge, June 4, 2003

Click here: Could Elevated EBV Antibodies Herald MS?

Thsnk you for sending this to us. No Iøve never heard of this before but it
surely sounds interesting.
hugs
Annette
-----Oprindelig meddelelse-----
Fra: Not telling your Freaks! [mailto:candywheel@...]
Sendt: 18. september 2003 11:09

We would like to remind you of this upcoming event.
Sylvie Brown' birthday!
Date: Thursday, September 18, 2003
Time: All Day
Sylvie's email addy is
Sylvia.Brown@...

We would like to remind you of this upcoming event.
"Challengers' MS Support Group Mtg
Date: Wednesday, September 17, 2003
Time: 11:30AM - 2:00PM EDT (GMT-04:00)
This MS Support Group meets every other Wednesday in the
basement of St. William the Abbot RC church at 2000 Jackson Ave
in Seaford, NY

Click here: MRI Allows Earlier Diagnosis, Treatment of Multiple Sclerosis

Click here: www.DisabledandProud.com - Disabled and Proud / Disability and Pride

In a message dated 09/15/2003 12:02:47 PM Eastern Daylight Time, dgeditor@... writes:

True Life: I Have Obsessive-Compulsive Disorder
We want to look into the world of someone whose life is affected by
obsessive-compulsive disorder. Do you think you have OCD and are thinking
about going to a doctor to get diagnosed and treated? Does it affect you so
much that it keeps you from living a normal life and is putting strain on
your relationships? Have you already been diagnosed and are working toward a
more manageable life?
If you are between the ages of 16-24 and willing to let MTV document your
situation, we want to hear from you! Email us at ocd@...

In a message dated 09/15/2003 1:09:00 AM Eastern Daylight Time, chris_sullivan@... writes:

So I was thinking to myself: if Scandinavians live so far north surely they have well-adapted
mechanisms for coping with and adjusting to changes in the length of the day. Of all people,
why would they be most prone to MS?

I thought about a scenario. Young Viking men go on a long long exploration aboard ship. They
land. They even settle some places. Because not only do they find food and trees, there is
something else here they haven't seen since they left home: women!

Some marry and their progeny return to Scandinavia.

"Genetic Studies conducted on full-blooded indigenous populations from North, Central, and
South America (the New World) has identified a limited number of shared genetic markers.
These markers have very specific modes of inheritance and are relatively unique to populations
with Native American Ancestry. There are 2 types of inheritance pattern categories that these
markers follow, either a directly paternal linkage (i.e., male-to-male-to-male, etc.) or a
directly maternal linkage (i.e., female-to-all her children. Then, only the female children
pass it on to all their children).
...
The data also demonstrates a possible 4th migration the actually took place about 15 thousand
years ago. Some researchers have suggested that this group could be related to the Scandinavian
Vikings, and may have crossed the Atlantic and mixed with Native Americans that crossed the
Bering Strait (haplogroup X).

The markers passed from mother to children are carried in the mitochondrial DNA (mtDNA)" [1]

This haplogroup X is the sons and daughters of the Vikings who mixed with Native Americans.

Perhaps the genes and alleles that come from America do not produce appropriate proteins to
help the circadian clock adjust to changes in day length.

Mybe the offspring of this haplogroup X have a new disease: MS.

These folks don't do as well taking long ocean voyages.

So why do twice as many women as men get it? Does *that* have to do with their ancestry?
No. It is a property of genes, the haplogroup X genes, but it's a few other things
besides.

"It is also the case that women's genetic make-up is different to men's, having two X-chromosomes
whereas men have one X- and one Y-chromosome. Whether one or more of the hypothetical multi-
factorial genes that confer an increased risk of MS or other autoimmune diseases lies on the
X-chromosome is something worth considering." [2]

But that would make it a recessive trait, like red hair or baldness. I would have thought
that would be noticed.

"...steroids exhibit dose-dependent biphasic effects on immune cells, whereby low
concentrations facilitate, and high doses inhibit, cell-mediated immune functions ."

"...a biphasic dose effect has been ascribed to estrogen, with low doses facilitating and
higher doses inhibiting immune cell functions. Other sexually dimorphic hormones, such as
prolactin, GH, and IGF-1 may play a role in the enhanced immune responses in females. [3]"

Don't these dosage effects sound familiar? How many more hormones, or hormone receptor
agonists and antagonists, are like that (biphasic wrt dosage)?

Estrogen allele ESR1 when combined with Human Leukocyte Antigen complex allele DR2
has been shown to affect MS risk (Mattila et al.), having influence on the familiar 2 to
1 ratio of women MS sufferers. [3]

[1] http://www.genetree.com/product/native-american-test.asp

[2] http://www.mult-sclerosis.org/whogets.html

[3] Mattila, K.M., Luomala, M., Lehtimaki, T., Laippala, P., Koivula, T., Elovaara, I.
Interaction between ESR1 and HLA-DR2 may contribute to the development of MS in women
Neurology 2001 56: 1246-1247
[4] Whitacre CC, Blankenhorn E, Brinley FJ Jr, et al. Sex differences in autoimmune disease:
focus on multiple sclerosis. In: Science [online].
Available at: www.sciencemag.org/feature/data/983519.shl.

[5] A Gender Gap in Autoimmunity
Caroline C. Whitacre, Stephen C. Reingold, Patricia A. O'Looney, and the Task Force on Gender,
Multiple Sclerosis and Autoimmunity
<http://www.sciencemag.org/cgi/content/full/283/5406/1277
[6] Effect of human leukocyte antigen heterozygosity on infectious disease outcome: The
need for allele-specific measures
Marc Lipsitch,Carl T Bergstrom Rustom
BMC Medical Genetics 2003 4:2
The electronic version of this article is the complete one and can be found online at:
<http://www.biomedcentral.com/1471-2350/4/2

Thanks Carol,
Actually except for the first exaberation of numbness and tingling, with extreme fatigue, I am feeling quite normal. The MRI however looks like buckshot and there is one lesion on the spine as well, so imagine that means I can expect to deal with more symptoms as time goes on. ???
My issue at the moment is my neuro wants to wait and see how long till my next "attack" (have teensey amt of residual numbness in the leg) to "establish a baseline" of symptomology in my case.
Everything I read indicates that I should go on the betapheron shots (or SOMETHING) right now, to prevent it worsening.
Opinions appreciated!!!
Kim

I still remember reading about ms, after I was diagnosed, and thinking
how am I going to fuction with this terrible disease. Fortunately we all
have to deal with it one day at a time.
To be sure its scary. There are some good medicines to help cope with
the disease,
If you dont already have a neurologist I would find one , They should
know about the new medicines available that slow the progression of
ms,
There are medicines to treat many of the symptoms of ms,
A good scourse of information is the national ms society,
Take care of yourself. Ask for help espeacially with 3 young kids,
carol

In a message dated 09/05/2003 2:39:46 PM Pacific Daylight Time, p.lorette@... writes:

I am new to this group.
What specific care do you need? Have you tried agencies?
Kim

Hi,
Does anyone know about the effects of carbonation on
nerves. I have read that carbonation stimulates nerve
endings. This may explain why legs seem to work
better when I have had a soda.
I would be very interested in any experience that
others may have had regarding this or any knowledge of
the effects of carbonation.
Regards,
Vijay
=====
Vijay Kulkarni, President
GL Communications Inc.
207A Perry Parkway, Suite One
Gaithersburg, MD 20877
(V) 301-670-4784 x115
(F) 301-670-9187
vkulkarni@..., http://www.gl.com

We would like to remind you of this upcoming event.
Jan's birthday!
Date: Thursday, September 4, 2003
Time: All Day
Jan's email addy is
gillettjan@...

MY computer was down. from lightening.

As the anniversary of the terrible 9-11-01 terrorist attacks on the United
States nears, I wanted to invite those of you who haven't yet heard it--and
those who'd like to hear it again--to visit one of my music web sites and
download or stream "As Heaven Weeps," the tone poem I wrote and recorded in
memory of the victims and heroes of that horrible event. If you have a
MIDI keyboard or a tone generator (especially a Yamaha PSR 740 keyboard),
you might prefer the MIDI version. It is available on the Songs Page of my
web site, http://www.geocities.com/dhcpolwnk and on my PSR Performer's
Page at the PSR Tutorial web site,
http://psrtutorial.com/Performers/PP_LRM/pp_lrm.html .
However, if you don't have the right keyboard or tone generator, you can
stream and/or download it from my MP3 web
site, http://www.MP3.com.au/LauraRemsonMitchell .
(You can listen to the MIDI version with a standard computer sound card,
but the instrument voices won't sound the way I intended them to sound.)
At about 13 minutes, "As Heaven Weeps" is the longest and most ambitious
piece I've ever written. (It's kind of a sound track to the events of
9-11.) I know a lot of people may already have heard "As Heaven Weeps,"
but others haven't. And with the anniversary date fast approaching, I
thought it might be of interest to some.
--Laura
|============================================================|
| 0 People with disabilities: A resource to recognize, |
| |_ *not* a problem to solve! |
| ( \_) ========================================= |
| *** Copyright 1999-2003 |
| by Laura Remson Mitchell |
| (e-mail: af752@...) |
| |
| Visit my award-winning personal web site, LRM's Place, at: |
| |
| < http://www.geocities.com/CapitolHill/Lobby/7853
| shortcut: < http://www.geocities.com/dhcpolwnk
| |
| [Last updated June 11, 2003.] |
| Now includes Search Engine and News Page (updated daily)! |
| ******** |
| Listen to .mp3 versions of my original music at: |
| < http://www.MP3.com.au/LauraRemsonMitchell
| (Latest .mp3 song released June 12, 2003) |
| |
|============================================================|

We would like to remind you of this upcoming event.
"Challengers' MS Support Group Mtg
Date: Wednesday, September 3, 2003
Time: 11:30AM - 2:00PM EDT (GMT-04:00)
This MS Support Group meets every other Wednesday in the
basement of St. William the Abbot RC church at 2000 Jackson Ave
in Seaford, NY

We would like to remind you of this upcoming event.
"Elf"'s birthday!
Date: Monday, September 1, 2003
Time: All Day
Her email is sapeloelf2002@... or sheadley@...

Bike Tour for a Good Cause!
Multiple Sclerosis Society, New York City Chapter
Dear All,
On Sunday, September 14, 2003, I will be one of 5,000 cyclists in
the 19th annual MS Bike Tour. This year the goal is to raise more
than $1.5 million, and I want to help the MS Society reach that
goal. I will be cycling 60 miles to raise money for the MS Society.
Pledging is now easier than ever!! To make a pledge to me, simply
click on the link http://www.thekarma.com/myBikeTour2003.html
or if you prefer, mail your check to me at:
261, Carlton Ave, Piscataway, NJ - 08854.
Make Check Payable to "MS Society"

Hi Kimberly,

I was in the same boat that you are in back in 1984 when I was diagnosed. Go to www.copingandprevailing.com If you cannot afford to pay for the book send me your mailing address and I will send it to you.

Ms is surely a problem at times but those times do pass and ms is a very manageable circumstance. My daughter was 7 at that time. She is now 26 and has been most instrumental with my motivation and success with ms. There is no reason why you cannot and will not have an active, happy and fulfilling life. There is also no doubt that God will be with you every step of the way.

Regards,

Tom

Hello everyone,
I have started a groups for people with MS, know someone with ms, or
just care about people with MS in NY!
Please join and introduce yourself!

We would like to remind you of this upcoming event.
"Challengers' MS Support Group Mtg
Date: Wednesday, August 20, 2003
Time: 11:30AM - 2:00PM EDT (GMT-04:00)
This MS Support Group meets every other Wednesday in the
basement of St. William the Abbot RC church at 2000 Jackson Ave
in Seaford, NY

Irene \
I dont sleep late as I have pets and they want to be fed. I slept late
this morning 7:30 .
I tried to contact Jayne to ask her a question. She sends me attackments
.

Hi, I need a PT ASAP who is knowledgeable about Multiple Sclerosis
for my friend in Long Island City.
He is very in tune with his body, knows when he needs to stretch and
stop or keep going, and needs someone who is willing to work WITH him
and not rush off if he needs a few more minutes to stretch.
He lives right on the water, near the G train and the LIRR.
He has insurance and is a GREAT guy.
Please email me and I will forward his information.
Thank you!
msfriendinny@...

If you are taking Beta Serion, I strongly suggest you call your Beta Nurse. I know that the one in Tennessee has lots of information on staying and getting cool in the hot weather.
Hal

Thanks, I hope so too. I'd like to get more exercise to lose some weight and build up some muscle reserves in case of surgery, but anytime after 10 it's too hot. I'm back on Provigil which helps, but I still need to take a rest/nap late afternoon. Which I could stop that because it limits time I have to get things done. I have lots to do, too! Oh well, it'll wait a bit longer!

Irene

Hi Posters,
Well it seems this chemo drug will not be an option for my s-in-law
since I learn she had rheumatic fever as a child and has a heart
murmur.
Thanks for replies and good wishes to you all.
Kindest regards,
Diana

Dear ms community:
Is anyone else having a problem? For about a month and a half now, I have
not received anything from Lemmoncake, Irene, or any ms research info. Is
anyone else having the same problem? Miss hearing from you guys.
Hilary

Happy birthday Linda carol

We would like to remind you of this upcoming event.
Basia's birthday!
Date: Saturday, August 16, 2003
Time: All Day
Basia has an email addy of
Basia12065@...

Hi folks,

I changed my e-mail address to get rid of the hundreds of porn messages that were arriving each day.

As a result shazzam, all things bright ands beautiful, except that I was missing out on the MS Communities news.

Anyway, all being well I am back, and this time I can let all you know who have been having scanned copies of the "New Pathways" magazine sent to them that they can now download them at leisure from www.msrc.co.uk , and this will be a bonus for all those who had found my files too large for their inboxes.

Best wishes to all,

Malcolm Birkenshaw
tel/fax: 01977-681355

NEW default e-mail:- mbirkenshaw@...

NEW web site www.albatrossbooks.co.uk

Welcome back! Glad you could get rid of the porn spam and get back to us! Thanks for the ezine, too.

Irene

That is another name for Novatrone. Novatrone has been approved for use with MS patients. I know that it sure did help my wife. I would highly recommend it. You are limited to eight treatments. Jan suffered no side effects. BUT she did have other IV before she got the Novatrone that wards off some of the side effects.
Hal

Hi Everybody
I'm posting on behalf of my sister in law who has taken a very bad
turn for the worse.
Her doc is advising treatment with Mitozantrone.
Has anyone here experience with this drug?
Has anyone here experience with any other chemo therapy drug for
multiple sclerosis?
Thanks very much information about this or anything else at this time.
She tried Copaxone and had a very bad unique reaction. So that's not
an option.
Thanks in advance,
Kindest regards,
Diana
We live in Canada.

Thanks Carol

I only saw your message today! The MS has been playing up and I feel very weak. It is hard because I am getting married in September and have lost all motivation to get organised with that.

Love

Bernie

We would like to remind you of this upcoming event.
"Challengers' MS Support Group Mtg
Date: Wednesday, August 6, 2003
Time: 11:30AM - 2:00PM EDT (GMT-04:00)
This MS Support Group meets every other Wednesday in the
basement of St. William the Abbot RC church at 2000 Jackson Ave
in Seaford, NY

http://www.ldninfo.org is their home page.
It's Low Dose Naltrexone, usually 3 or 4.5 mg

I am not on my webbie every day so I just read about it today,
Please do what ever you can to not get too stressed out at this time,
carol

We would like to remind you of this upcoming event.
Madeline's birthday!
Date: Thursday, July 31, 2003
Time: All Day
Madeline is emholmes@...

Good luck Malcolm. I've been taking LDN since 4/17, so #107 was a few hours ago.

Hope to hear you're doing well with it also.

Dear MS Community,
Due to being flooded with unsolicited mail I am now using as my default
e-mail address mbirkenshaw@... . I should be grateful if you could
make arrangements to send your digests to this address in future.
Malcolm Birkenshaw
Hillam
Leeds
LS25 5HD
01977 681355
Default e-mail: mbirkenshaw@...
redundant e-mail m.birkenshaw@...
Web site: www.Albatross-Books.co.uk

So sorry for your loss. Take good care of yourself. Stress may play a role in exacerbations, so do your best to find time to relax and de-stress.

Irene

My dear Friends

I have not been checking mail for a while. My Mom passed away unexpectedly last Sunday. Life has been hell. It was a dreadful shock.

Anyway, today is the first day that I am feeling up to checking mail. As luck would have it, the MS is playing up and I can hardly walk.

Take care everyone

Love

Bernie, Hazey and Penny, of course!

Happy birthday Barb.
--
Take care,
Debbie

Have a wonderful birthday Vincent!
--
Take care,
Debbie

We would like to remind you of this upcoming event.
"Challengers' MS Support Group Mtg
Date: Wednesday, July 23, 2003
Time: 11:30AM - 2:00PM EDT (GMT-04:00)
This MS Support Group meets every other Wednesday in the
basement of St. William the Abbot RC church at 2000 Jackson Ave
in Seaford, NY

Does anyone know what has happened to Stephanie? She was a moderator
for this group but has not posted in several months.
Regards,
Tom

We would like to remind you of this upcoming event.
Vincent's birthday!
Date: Wednesday, July 23, 2003
Time: All Day
Vincent's email addy is
showalt@...

I think you have a good idea in people telling their stories,Jayne
carol

drive? My doctor suggested soymilk becausse I have a history of cancer
so he did not want me to take estrogen,
Has any one tried the drug aricept to improve ones memory? THis drug
was mentioned in the latest MS news letter?
THanks for your help, carol

Enjoy your birthday Miklos and many more
Take care
--

I wish you a wonderful birthday.
Take care,

Happy B-Day Julie.
--
Take care,
Debbie

Your friend thought you should see this article on New Scientist.com today.
Follow the link below for the full story:
Blood test may predict multiple sclerosis
http://www.newscientist.com/news/news.jsp?id=ns99993931
Their message:
Again
New Scientist.com is the world's leading online science and technology news
service, with a global network of award-winning journalists.
Visit www.newscientist.com now for constantly updated and authoritative
reporting that's both fast and fascinating.

We would like to remind you of this upcoming event.
Julie D's birthday!
Date: Tuesday, July 15, 2003
Time: All Day
Julie is JDanelski@...

Costly Lawsuits Dampen Outlook for Clinical Trials
By David Morgan
PHILADELPHIA (Reuters) Jul 01 - Human clinical trials, already
under
scrutiny by regulators and Congress after a spate of deaths, face
a
rising tide of liability lawsuits that could alter U.S. medical
research, a Harvard study suggested on Monday.
Within the past three years, researchers say, legal claims
including
class-action suits have begun targeting universities and
research
institutions that recruit millions of people for clinical trials of
new drugs and other medical treatments.
As a result, a team of legal experts at the Harvard School of
Public
Health said human-subject research costs are likely to rise as
legal
judgments increase, while trial methods could fall victim to
tough
regulation to minimize legal exposure.
"We fear that the combination of more bureaucratic regulatory
oversight and significant exposure to litigation could lead to
worse,
not better, decision-making about the ethics of research
studies," the
Harvard team said in an article published in the Annals of
Internal
Medicine.
The National Institutes of Health say there are 6,300 clinical
trials
under way in the United States, involving more than 2 million
people
who must formally agree to participate in research overseen by
institutional review boards.
The self-regulated system came into being decades ago in
response to
the Tuskegee syphilis experiments in which researchers
withheld
treatment from black participants.
Critics say the charging U.S. stock market of the 1990s helped
inflame
corporate demand for new drug products, leading medical
researchers
into potential conflicts of interest.
"There are 10 times the number of clinical trials going on today,"
said trial lawyer Alan Milstein, who specializes in clinical trial
litigation and rejects suggestions that recent lawsuits could
stifle
research.
"There have been some widely publicized bad outcomes for
trials at
well-reputed institutions which have caught the public's
attention,"
said Michelle Mello, assistant Harvard professor of health policy
and
law.
"With the growing participation of the pharmaceutical industry in
trials, you have perhaps the greater perception that these are not
doctors working to improve public health."
A spokesman for the U.S. pharmaceutical industry said
drugmakers are
victimized by a "bad perception," which he blamed on the
distortions
of critics.
Mello said shifting perceptions surrounding clinical trials had
already raised legal risks for clinical studies.
Where lawsuits once focused on consent issues, legal claims
now
include fraud or even allege violations of international laws such
as
the Nuremberg code on human experimentation from the trials
of Nazi
war crimes.
Lawsuits also have come to name larger numbers of
defendants, from
drug company sponsors and top university officials to review
board
members and consulting bioethicists.
Reuters Health Information 2003. © 2003 Reuters Ltd.

Jayne sent you this MSNBC News Link:
Message:
Thought youd be interested in this.
** Dateline special: Drug giant accused **
"Dateline" has the results of a year-long investigation into what may be one of
the biggest medical deceptions in history. NBCs John Hockenberry reports.
http://www.msnbc.com/modules/exports/ct_email.asp?/news/937302.asp

July Teleconferences and Chat on Exercise
07/01/2003
July MS Dialogue Teleconference and (New in 2003) Expert
Chat! Topic: Exercise: The Importance of Health and Fitness It's
no secret that regular exercise can be beneficial. But what do
people with MS need to know before starting an exercise
program? Speakers: Dr. Randall Schapiro Founder and Director
of the Fairview MS Center, Clinical Professor of Neurology at the
University of Minnesota Dates:
* Teleconference 1: July 8 - 8:00 PM EDT (5:00 PM PDT)
* Teleconference 2: July 9 - 8:00 PM EDT (5:00 PM PDT)
* Online Chat: July 10 - 8:00 PM EDT (5:00 PM PDT) Call 1-800-
938-1912 to register for one of the teleconferences then go to
www.msdialogue.com and join to participate in the interactive
chat session on the 5th! Teleconferences and chat are FREE
and open to everyone!
COPAXONE® (glatiramer acetate injection) Product In

Blood Test Could Speed MS Diagnosis
If effective, it could lead to earlier use of drug therapies, a new
study
says.
By Amanda Gardner
HealthDay Reporter
WEDNESDAY, July 9
(HealthDayNews) -- A blood test may one day help predict which
people with
potentially early symptoms of multiple sclerosis will go on to
develop the
disease.
The test has generated some cautious optimism among
scientists because it's
quick, easy and the results, albeit in a relatively small and
homogenous
group of people, were quite accurate.
The results of the study are outlined in the July 10 issue of the
New
England Journal of Medicine.
"It's important to keep in mind that this is very much a preliminary
data
set and so it is not yet ready for prime time in terms of flying as a
diagnostic test," says Dr. Amit Bar-Or, author of an editorial in the
same
issue of the journal.
"People have identified in the past tests that might serve a
similar purpose
only to find later on that they didn't have the same kind of
accuracy that
they hoped," adds Bar-Or, an assistant professor of neurology
and
neurosurgery at the Montreal Neurological Institute.
Multiple sclerosis is thought to be an autoimmune disease that
affects the
central nervous system. The most common characteristics of
the disease
include fatigue, weakness, spasticity, balance problems,
bladder and bowel
problems, numbness, vision loss, tremor and vertigo.
Most patients who are eventually diagnosed with multiple
sclerosis first
seek help with symptoms suggestive of MS -- called "clinically
isolated
syndrome" -- that cannot yet be definitively diagnosed.
"Diagnosis is difficult and there is no single test that can tell you
whether or not you have MS," says Stephen Reingold, vice
president for
research programs at the National Multiple Sclerosis Society.
"Many people
who end up having MS have signs and symptoms that could be
a dozen different
things," such as stroke or brain tumors.
Diagnosis can take years and, during that time, treatment is
often put on
hold. "One of the challenges is that there are drugs that can treat
MS and a
general sense that the sooner you treat it the better you are,"
Reingold
says. "The question then is ... what can you do to speed the time
to say
this person has MS?"
There are some techniques to help with diagnosis, notably
magnetic resonance
imaging -- or MRI -- to detect telltale lesions in the brain, but
nothing
that does so with overwhelming accuracy.
The authors of the new study looked at 103 patients who had
had a
"clinically isolated syndrome," along with positive findings for
lesions on
their MRIs and on a test of their cerebrospinal fluid.
The patients were then tested for antibodies against myelin
oligodendrocyte
glycoprotein (MOG) and myelin basic protein (MBP), two brain
proteins that
scientists know are involved in MS.
Eighty-three percent of patients who tested positive for the anti-
MOG
antibodies and 95 percent of those who tested positive for both
anti-MOG and
anti-MBP antibodies had a relapse within approximately one
year. Three
quarters (77 percent) of those who tested negative for both anti-
MOG and
anti-MBP antibodies did not suffer a relapse during that period.
It's very likely that all the patients in the study, given their MRI and
spinal fluid results, would have received a certain diagnosis of
MS in five
to 10 years. This test simply showed that they were likely to have
a relapse
leading to a definite clinical diagnosis of MS within one year if
they
tested positive for both antibodies.
"Being able to have a greater sense of confidence earlier on that
an
individual will end up with a diagnosis of MS, once
substantiated, would
allow us to recommend therapies at the earliest stages," Bar-Or
says.
"Once you have a clinical diagnosis, then you are in a position to
be able
to make treatment choices and the best data we have suggests
that the
earlier you treat, the better," Reingold adds.
Having a blood test such as this may cut the diagnosis time a
bit. But it's
important to note that MRIs already provide some of the
necessary
information used for a diagnosis of MS. And some drugs are
approved to give
to patients even before their diagnosis is definitive, Reingold
says.
It would be interesting to see if the antibody test ultimately
proves more
effective than an MRI, Reingold says.
"One wants to appropriately balance out the excitement about
this type of
approach with how early it is," Bar-Or cautions.
More information
For more on MS, visit the National Multiple Sclerosis Society or
the
Multiple Sclerosis International Federation.
Copyright © 2003 ScoutNews, LLC. All rights reserved.
Last Updated: July 09, 2003
--
For this and many more articles, see Paul Jones' website at
http://www.mult-sclerosis.org/
Post a follow-up to this message

Enjoy your birthday. Have a very happy one!
Take care,
Debbie

New York Times
Canada to Offer Marijuana to Medical Patients
By CLIFFORD KRAUSS
ORONTO, July 9 - The Canadian government announced an
interim plan today
that will provide marijuana on a regular basis to several hundred
people who
are authorized to use the drug for medical reasons.
Coming six weeks after the federal government introduced a bill
decriminalizing possession of small amounts of marijuana and
only days after
it approved a trial "safe injection site" in Vancouver for
intravenous drug
users, the marijuana plan was one more sign that Ottawa is
moving in a very
different direction on drug policy from the Bush administration.
Advertisement
Thousands of Canadians already visit so-called "compassion
clubs" in
Vancouver and a few other cities, which distribute marijuana to
those who
come with a note from a doctor saying that the drug can help
their
condition. The police have occasionally entered some of the
clinics and
seized marijuana, but for the most part they function in the open.
The decision to allow the government to provide marijuana to
people with
illnesses ranging from cancer to arthritis to epilepsy was forced
by a
ruling in January by the Ontario Superior Court that federal
marijuana
access regulations were unconstitutional because they did not
provide
patients with a legal distribution system.
The government is appealing the ruling, meaning that the
announcement may
not stand.
"It was never our intention to sell the product," said Health
Minister Anne
McClellan, a skeptic of medical marijuana use.
The cabinet is divided on whether the government should be
growing and
distributing marijuana, an activity that is otherwise illegal. Ms.
McClellan
noted today that there is a lack of clinical evidence that
marijuana has
medicinal benefits. She added that the government will conduct
its own
clinical trials, scheduled to begin this fall, to gauge possible
benefits.
The government says it intends to distribute the marijuana
through doctors.
Some officials of doctors associations have raised cautions
about doing so
before there is more study about the impact of marijuana use on
people's
health.
While the courts decide on the government's appeal, Ottawa will
provide as
many as 500 people, who have received letters from doctors
saying the drug
offered them medical benefits, with dried marijuana and
marijuana seeds for
their own planting.
The marijuana will cost patients almost $4 a gram, or about half
the black
market price.
The bags of seeds will cost about $15. The marijuana will come
from an
underground laboratory situated in an old mine in Flin Flon,
Manitoba.
"This is a very small victory but a victory nevertheless," said
Alison
Myrden, a multiple sclerosis patient who appeared before
television cameras
today in front of the Parliament building holding a marijuana
plant and
smoking a marijuana cigarette.
--
For this and many more articles, see Paul Jones' website at
http://www.mult-sclerosis.org/
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This article from NYTimes.com
has been sent to you by jayneadler@....
Thought this might interest you.
jayneadler@...
/

http://www.click2houston.com/health/2322013/detail.html
Stimulation Help Spinal Cord Patients Walk Again
Implanted Device Helps Muscles Move
UPDATED: 5:52 p.m. EDT July 9, 2003
PHILADELPHIA -- Paralysis clearly means learning to give up
many of the
activities to which you are accustomed to doing. In many cases,
that can
mean not being able to go places that aren't wheelchair
accessible or even
standing to get something off a shelf.
Now, new research at the Shriners Hospital in Philadelphia
brings paralyzed
people a little closer to a normal life.
With the push of a button, something amazing happens to Les
Kirk. He is
beating all odds and a spinal cord injury.
"Before I even talked to the doctors, I couldn't move my legs," Kirk
said.
He may not be riding motor cross anymore, but walking a set of
stairs is a
different type of excitement -- for Kirk, and for Dr. Randal Betz.
"It makes all the years of research work and all the dollars that
the
Shriners so generously put forth really worth it," said Betz, a
pediatric
spinal surgeon at Philadelphia Shriners Hospital.
Kirk has an implanted receiver with an external antenna. Wires
connect the
electrodes located on his muscles. When activated, electrical
stimulation
forces his muscles to contract or relax in a specific pattern.
"Just as you and I would do except that instead of us doing it by
our brain,
it's being done by a computer," Betz said, and unlike a typical
person,
Kirk's muscles stay stimulated until the device is deactivated,
limiting how
far he can go. What stops Kirk's muscles from going 200 feet or
500 feet is
that they're exhausted, according to Betz.
"It's like you or I running a hundred-yard dash," he said.
Kirk had to work hard to strengthen his muscles so he can do
more, but it's
safe to say he's mastered the technology enough to do daily
activities, as
well as some activities he thought he'd be forced to give up.
"I ride my four wheeler standing up and stuff. That's pretty neat,"
he said.
For the functional electrical stimulation to work, a person has to
have
spasticity in the muscles and living nerves. Betz said it can help
people
with spinal cord injury, cerebral palsy and multiple sclerosis. As
at all
Shriners Hospitals, the treatment is completely free to patients.
If you would like more information, please contact:
Therese Johnston
Research Associate
Shriners Hospital for Children
(215) 430-4089
Copyright 2003 by Ivanhoe Broadcast News. All rights reserved
--
For this and many more articles, see Paul Jones' website at
http://www.mult-sclerosis.org/
Post a follow-up to this message

We would like to remind you of this upcoming event.
Charles Galloway's birthday!
Date: Thursday, July 10, 2003
Time: All Day
He is gallowayc@...

Male hormones may play a role in menstrual problems of
diabetic women
07/08/2003
Diabetic women seem to be more likely to have menstrual
problems and an excess of male hormones may be one
explanation for the problems, according to a new recent study.
The investigators reported both acne and irregular menstrual
cycles in women with type 1 or 2 diabetes might be associated
with an excess of male hormones in the body called androgens.
In type 2 diabetes, the body stops responding properly to insulin,
which is a key blood sugar-regulating hormone. Type 1 diabetes
is a form of the condition that commonly shows up in childhood
or young adulthood.
The study authors distributed questionnaires to 28 women with
type 1 diabetes, 32 women with type 2 diabetes, and 32 women
without any form of the disorder.
The study authors found women with type 1 diabetes are more
likely to report acne than women without that form of the
disease. In addition, they noted that women with type 2 diabetes
are more likely to experience long stretches between their
menstrual cycles.
This may be one explanation for why women with diabetes are
more prone to heart disease, lead study author Dr. Mary
Korytkowski said in an interview with Reuters.
In addition, she said that the possible link between diabetes,
irregular menstrual cycles and acne could be related with
polycystic ovary syndrome (PCOS), a hormonal disorder marked
by high levels of male hormones as well as a tendency toward
obesity.
Korytkowski also noted that past research has shown PCOS
may increase the risk of heart disease. The presence of the
condition in diabetic women could explain why diabetes is linked
with a risk of cardiovascular disease.
She also noted that PCOS is found more often in women with
type 1 diabetes. However, Korytkowski said additional studies
need to be conducted to determine the relationship between
male hormones, PCOS, diabetes and heart disease.
The study results were presented at the recent annual meeting
of the American Diabetes Association in New Orleans.
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ENS: Higher Dose/Frequency Rebif (Interferon beta-1a) Provides
Significant
Reduction In Frequency Of Multiple Sclerosis Relapses In
Patients Who
Convert From Avonex
New data presented today at the 13th Meeting of the European
Neurological
Society
http://www.docguide.com/news/content.nsf/News/
8525697700573E1885256D490052DF9F
June 18, 2003
SOURCE: Pfizer, Serono
Geneva, Switzerland, Rockland, Ma, and New York, NY
Patients who converted from Avonex® (interferon beta-1a, 30
mcg once weekly)
to higher dose, higher frequency Rebif® (interferon beta-1a, 44
mcg three
times weekly), showed a significant reduction in frequency of
relapses and
MRI lesion activity, Serono, S.A. and Pfizer Inc announced today
at the 13th
Meeting of the European Neurological Society (ENS) in Istanbul,
Turkey.
At the conclusion of the comparative phase of the EVIDENCE
study, patients
randomized to Avonex were offered Serono's multiple sclerosis
therapy,
Rebif. Approximately 73% of Avonex patients (n=223) chose to
convert to
Rebif. During the six months Following their change in therapy,
these
patients experienced a 50% relative reduction in the frequency of
relapses
(0.6432 vs. 0.3216 annualized rate; p<0.001) and a 22% relative
reduction in
MRI lesion activity (mean number of T2 active lesions per patient
per scan;
0.9 vs. 0.7; p=0.022) compared to the previous six months. The
exact
relationship between MRI findings and clinical outcomes for
patients is
unknown.
"Patients who converted from Avonex to Rebif in the non
comparative phase of
the Evidence study experienced improvement in both relapses
and MRI lesion
activity that is both clinically meaningful and statistically
significant,"
said Dr. Mohammad K. Sharief of Guy's Hospital, London, a
clinical
researcher presenting the data for the EVIDENCE study group at
the ENS
Meeting. "These data provide valuable information for people
with relapsing
forms of MS and their physicians in determining whether a
change in therapy
would be beneficial. Furthermore, these findings support the
results of the
comparative phase of the EVIDENCE study."
The EVIDENCE study, which involved 677 patients with
relapsing remitting MS,
was designed to compare the proportion of patients who were
treated with
either Rebif (44 mcg three times weekly, subcutaneously) or
Avonex (30 mcg
once weekly, intramuscularly) who remained relapse-free after
24 weeks
(primary endpoint) and 48 weeks of therapy. The results showed
that patients
treated with Rebif were significantly more likely to remain
relapse free at
24 and 48 weeks than were patients treated with Avonex. In
addition,
patients taking Rebif had fewer active lesions per MRI scan for
all studied
activity measures and there was an approximate one-third
relative difference
in favor of Rebif for measures of MRI lesion activity.
No new safety issues were noted in the cross-over extension
phase of the
EVIDENCE study. Patients converting from Avonex to Rebif, as
expected based
on increased dose and frequency of subcutaneous
administration, experienced
an increase in interferon related side effects. These included
injection
site reactions and in asymptomatic changes in white blood cell
counts and
liver function tests. Discontinuation due to adverse events was
5.8%, which
is similar to discontinuation due to adverse events for patients
on Rebif
during the comparative phase of the EVIDENCE study.
Additional Information
Multiple sclerosis is a chronic, inflammatory condition of the
nervous
system and is the most common, non-traumatic, neurological
disease in young
adults. MS may affect approximately two million people
worldwide. While
symptoms can vary, the most common symptoms of MS include
blurred vision,
numbness or tingling in the limbs and problems with strength
and
coordination. The relapsing forms of MS are the most common.
Rebif (interferon beta-1a) is a disease-modifying drug used to
treat
relapsing forms of multiple sclerosis and is similar to the
interferon beta
protein produced by the human body. Interferon helps modulate
the body's
immune system, fight disease and reduce inflammation.
Rebif was approved in the US on March 7, 2002, for the
treatment of patients
with relapsing forms of multiple sclerosis to decrease the
frequency of
clinical exacerbations and delay the accumulation of physical
disability.
Rebif, which is co-promoted in the United States by Serono and
Pfizer Inc,
is the only drug to gain exception to the marketing exclusivity
provision of
the Orphan Drug Act based on superior efficacy. The Orphan
Drug Act, enacted
in the US in 1983, provides drug makers with commercial
incentives to
encourage the development of treatments for patients with rare
and
debilitating diseases. Rebif was approved in Europe in 1998
and is
registered for use in more than 70 countries worldwide.
US residents can find more information about Rebif in the full
prescribing
information, on line at www.mslifelines .com or by calling MS
LifeLinesT at
1-877-44REBIF. Patients should be instructed to read the
Medication Guide
accompanying the product. Most commonly reported side effects
are injection
site disorders, flu-like symptoms, elevation of liver enzymes and
blood cell
abnormalities. Rebif is contraindicated in patients with
hypersensitivity to
natural or recombinant interferon, human albumin, or any other
component of
the formulation. Female patients should be informed of potential
hazards to
a pregnancy; discontinuation should be considered if pregnancy
occurs.
Patients, especially those with depression, seizure disorders, or
liver
problems, should discuss with their doctor whether Rebif is right
for them.
Copyright © 1995-2003 Doctor's Guide Publishing Limited
--
For this and many more articles, see Paul Jones' website at
http://www.mult-sclerosis.org/
Post a follow-up to this message

Largest real-life study shows advantages with 2 years of Avonex
compared to
other interferon beta preparations
QUASIMS study presented at European Neurological Society
Annual Congress

We would like to remind you of this upcoming event.
"Challengers' MS Support Group Mtg
Date: Wednesday, July 9, 2003
Time: 11:30AM - 2:00PM EDT (GMT-04:00)
This MS Support Group meets every other Wednesday in the
basement of St. William the Abbot RC church at 2000 Jackson Ave
in Seaford, NY

Happy B-Day Paul.
Take care,
Debbie

Have a wonderful B-Day Penny and many more!
Take care,
Debbie

When I was small I lived upon a long street from my elementary
school. I would walk to and fro for lunch, earning me the
designation of "walker". This was my first social designation and
I enjoyed it.
I was diagnosed with multiple sclerosis at the time of my first
major MS attack in August of 1987. It paralyzed me all along the
right side of my body. Treated with iv steroids, I recovered almost
completely from this attack but more attacks followed.I had
returned to school to get a Master's degree in clinical social
work after my first major MS attack but another attack ended my
career plans. Other attacks ensued over the next few years until I
began betaseron therapy in the Spring of `93. I did have another
attack shortly after begining therapy with betaseron. My doctor
explained that it hadn't had time to build up in my system. I didn't
have another attack until the following flu season and again
treatment with iv steroids got me back to my baseline abilities. I
was attack-free until I went off betaseron to take part in a peptide
vaccine trial. Within a month of stopping betaseron I had a new
attack. I gladly resumed betaseron at trial's end and have
remained on it.
My world now revolves around physical therapy appointments,
MS Society-sponsored aquatic classes & yoga classes.

New research funded by the MS Society
In the Autumn 2002 Grant Round 10 research proposals were
accepted for MS
Society funding. We take a closer look at four.
In May 2003, Teamspirit reported that 33 research applications
had been
received in the latest MS Society autumn grant round. Of these,
10 research
proposals were accepted for funding following a rigorous review
process. The MS
Society National Centre will fund eight of these, and a further two
will be
funded by MS Society, Scotland. Three of these projects were
described in May's
issue. Below, four more, all funded by the MS Society National
Centre, are
described.
How corticosteroids affect brain cells and myelin repair.
Dr. D. Chari Cambridge University
Four-year Junior Fellowship: £300,427
In MS, damage occurs to myelin (the protective, insulating
material of nerve
fibres) and to the nerve fibres themselves, which leads to
relapses and varying
levels of disability. Corticosteroids are widely used to reduce the
severity
and length of relapses in MS. At the moment however, it is
unclear whether
steroids actually increase or decrease the amount of myelin
repair
(remyelination) after a relapse. It is thought that steroids affect
the rate at
which oligodendrocytes (the cells which make myelin) grow,
although how this
works and what mechanisms are involved is unknown.
This study will look at how corticosteroids affect
oligodendrocytes using both
laboratory 'test tube' and animal models. This will enable
researchers to
assess whether alternative therapies that cause less damage to
oligodendrocytes
are needed, to treat relapses.
Using brain tissue from people with MS to find out how nerve
fibres are
damaged.
Professor M. Esiri Oxford University
Two-year Project Grant: £78,162
In MS, the amount of nerve fibre loss has been closely linked
with disability
levels and disease progression. Therefore understanding the
mechanism behind
nerve fibre loss may enable the development of therapies
targeted at preserving
nerve fibres and reducing disability.
This study aims to use brain tissue from people with MS and
diseases similar to
MS to discover if there are any underlying, common ways in
which the damage
occurs. This research will also provide information about the
amount of nerve
fibre loss, and at what stage in the disease major losses occur.
Investigating a gene in people with MS.
Prof. A. Compston
Cambridge University
Two-year Project Grant: £286,500
Although the cause of MS is unknown, several factors are
thought to play a role
including genetic and environmental factors. It is known that
some people have
an increased genetic susceptibility to developing MS. Previous
research has
shown that these people share common genes. One gene,
identified in a previous
study funded by the MS Society, named the POU2AF1 gene, is
common in people of
northern European origin. This follow-up research aims to
determine exactly
what the POU2AF1 gene does. It also aims to look at the
different variations of
this gene and determine which are responsible for increasing
people's
susceptibility to MS, by comparing genes found in people with
MS, to people
without MS.
This research aims to provide information about the
mechanisms behind
susceptibility and could provide new treatment opportunities,
targeted at
inactivating or modifying this gene.
An international database of how MS research is progressing.
Prof. A. Neiss
Sylvia Lawry Centre for Multiple Sclerosis Research, Germany
Five-year Project Grant: £150,000
Currently the main way of evaluating new drugs and treatments
for MS is to
carry out clinical trials where the treatment is compared to a
placebo (a
'control' known to cause no effect). This allows the effect of the
drug to be
evaluated. However, people are naturally becoming less keen to
participate in
trials where there is a risk of receiving placebo over new drug
treatments.
As an alternative, this research project aims to pull together
historical
information, including clinical and MRI (brain imaging) data from
people with
MS, to see if it is possible to predict how the disease will
develop.
Researchers will also investigate whether there are any
'markers' that could be
used to predict disease development and any common patterns.
It is hoped that
the data collected from this research will mean an end to
placebo-controlled
clinical trials, as a 'virtual' placebo group will be developed from
the data
available.
Marianne Miles Ph.D., Research Manager
Teamspirit July 2003
Post a follow-up to this message

How abt starting a "My Story" thread. Posts would be entitled "My
Story" & you'd include any material you'd like to share with the
online MS_Community. How's this sound to all of you?
Jayne

This article from NYTimes.com
has been sent to you by jayneadler@....
Thought this would interest you.
jayneadler@...
/

Got it, Tom!
Jayne

Have a very happy birthday Alison.
Take care,
Debbie

This article from NYTimes.com
has been sent to you by jayneadler@....
Thought this would be of interest to you.
jayneadler@...
/

Thanks for the card. Happy 4th 2 u.
Take care,
Debbie

Have a very happy birthday, Lisa.
Take care,
Debbie

Stress: A possible explanation for its role in affecting health
07/01/2003
Constant stress can significantly impact a person's healthv and
a new study may explain why stress is so wearing on health and
wellbeing.
Researchers discovered abnormally high levels of Interleukin-6
(IL-6), an immune-system protein in the blood that is linked with
age-related conditions such as heart disease, diabetes,
osteoporosis, frailty and certain cancers, in stressed elderly
people.
The six-year study investigated 119 men and women who were
caring for spouses with dementia and compared them with 106
people who were not caring for ill spouses. The study
participants ranged in age from 55 to 89 years old at the start of
the study.
Results of the study showed that IL-6 levels among those caring
for an ill spouse increased an average of four times faster than
in those who were not caring for an ill spouse.
Researchers reported the caregivers had a pattern of
consistently higher levels of stress and loneliness than the non-
caregivers throughout the study period. Results showed levels
of IL-6 kept rising several years later even in those whose
spouse died during the study.
During the study's follow-up period, researchers noted both the
caregiver and non-caregiver groups had similar chronic health
problems. However, the caregivers would most likely develop a
greater number of illnesses in the future due to their higher IL-6
levels, study author Dr. Janice K. Kiecolt-Glaser told Reuters.
"The take-home advice from this study is that it's really important
to try to deal with stress," she said. "The older you are, the more
it really matters."
The study was reported in the online early edition of the
Proceedings of the National Academy of Sciences.
COPAXONE® (glatiramer acetate inje

My neuro has started me on an oral drug, Celcept, (traditionally
used for organ
transplant patients)
rather than do the Novantrone therapy, because of my family
history of heart
disease. I've been on Celcept for 3 mos now. I had an initial ON
episode(all
better now) within a week of starting, and I am still susceptible
to every
cold I encounter, but I am stronger, not deteriorating, and feel it
has been a
positive step in my treatment. I need blood tests once a month
to make sure
white cell count is OK and liver is OK, and thusfar, everythng is
fine. (Like
you, I was on the injections-first Betaseron, then Avonex-for 9
years.) Maybe
you should talk to your doc about this alternative, since the
Novantrone is a
once in a lifetime shot. Good luck!
Post a follow-up to this message
Message 5 in threadFrom: Lynne (Lynne_Davis@...)
Subject: Re: Starting Novantrone...HELP

Human cells used to make paralysed rats walk
By Charles Arthur Technology Editor
03 July 2003
Cells from human embryos could be used to help some people
with spinal
injuries to walk again, successful work involving rats has
indicated.
Scientists from the University of California at Irvine college of
medicine said that paralysed rats walked again after being
injected
with stem cells from "early-stage" human embryos. They hope
that the
breakthrough will prove to American policy makers that the use
of
human embryonic stem cells and therapeutic cloning - presently
banned
in the US - are justified.
The team, led by Hans Keirstead, took stem cells from early-
stage
human embryos, and altered them in the laboratory into
oligodendrocytes. These are the primal cells that form myelin,
the
vital fatty sheath that surrounds nerve fibres. These cells were
transplanted into paralysed rats with bruised spines. After nine
weeks, the rats regained the ability to walk, New Scientist
magazine
reports today.
Analysis of the rats' spinal cords showed that the
oligodendrocytes
had wrapped themselves around neurons and formed new
myelin sheaths.
They also secreted growth substances that appeared to have
stimulated
the formation of new nerves.
Dr Keirstead said last week that he planned to use the same
technique
to treat human patients who had suffered recent spinal cord
injuries
and localised damage.
Treating people who have been paralysed for years or suffer
from
degenerative nerve diseases would be far more difficult. Stem
cells
can develop into every form of tissue in the body; early embryos
consist of stem cells, which then specialise as the embryo
matures. If
removed from the embryo early enough, they retain that ability to
metamorphose into any sort of tissue. That realisation opened
up the
possibility of many new treatments.
But in Britain and America, the use of stem cells is strictly
regulated, and the European Union may ban any such
experiments. In the
US, federal money cannot be used for stem-cell research.
The latest work was funded by the US biotechnology company
Geron,
whose president, Thomas Okarma, said only embryonic stem
cells could
really succeed in new therapies. Embryonic cells could be
mass-produced, unlike adult stem cells. Mr Okarma said that
one cell
bank derived from a single embryo could yield enough neurons
to treat
10 million Parkinson's disease patients. He added that adult
stem
cells might not be as versatile as embryonic ones.
He said: "At this moment, there is very little hard evidence that a
bone marrow stem cell can turn into anything but blood or that a
skin
stem cell can become anything but skin."
The method does not hold any immediate promise for accident
victims
such as the actor Christopher Reeve, who was paralysed from
the neck
down in a riding accident in May 1995. His spine was badly
crushed by
the bones of his neck, cutting many nerves to the rest of his
body. In
the rat research, the repaired nerves were only "bruised".
Mr Reeve has been among those lobbying to reverse the US
government's
opposition to stem-cell research. Dozens of scientists are
working on
spinal cord repair methodologies. But despite numerous
successes in
rats, hardly any have moved forward to human trials.
3 July 2003 00:19
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20th June 2003
Multiple Sclerosis Society
Speakers:
Dr John Zajicek
Prof. David Miller
Dr Alasdair Coles
William Ockenden:
My wife went on the trials for cannabis run by you, after being on
the
trials for
a year she has really improved but the trials finished and since
then she
has been in a terrible
state. We visited her consultant and he tried to prescribe Marinol
but has
been blocked from
doing this by your self and also because the drug company want
£12000 a
year. Why did you
not have a follow up report on the patients once they have
finished the
trials? It seems so
obvious that the benefits of which ever treatment my wife was
receiving were
so great it makes it
even more frustrating to know there is something out there that
is of
benefit to her and she
cannot get it.
Dr John Zajicek
Thanks for this. It hasn't been me who has been blocking
access to these
drugs, I've been trying
to organise supplies for some time. We are hoping to get
access via a "named
patient" basis,
which means that it will cost about £4 per capsule, and the
doctor
prescribing the drug and the
patient will have to accept responsibility for any side effects. The
results
from the study will come
out in september, and then the manufacturers will apply for a
license. If
all goes well, these
drugs should be available from at least 2 different sources by
early 2004.
Aaron
Are there next generation of drugs being developed
Dr John Zajicek
There are loads of new drugs being developed, and probably
many drugs
already around that
may help. The trouble is that testing them requires monay and
drug companies
often don't want
to pay for trials if anyone can make the drug (off-patent). If we
want more
treatments we need to
be able to pay for more trials!
Steven Wallace:
I am on a waiting list & have read up on Copaxone, I should be
on it by
Christmas. Are there better alternatives??
Dr John Zajicek
Copaxone is one of the new immunosuppressive drugs, like
beta-interferon,
although it works in
a different way. There are also older and newer drugs around,
many of which
do not have a
license in this Country but are being used. My own view is that
everyone's
MS is different, and
treatment for one person may not suit someone else. Someone
with mild
disease may need a
milder drug, whereas someone with different stage disease
may be suited by
something
stronger.
Mary Sarchese:
I started Copaxone Injections in March 2003 and since have
noticed my legs
have been increasingly weaker. Could this be a result of the
Copaxone
treatment? If not, is it an
attack or just the progression of my disease. My neurologist told
me not to
expect Copaxone
therapy to make me feel "better" but I was not expecting to get
worse at
this rate. When does a
person decide that this may not be the correct treatment for them
and try
something else?
Dr John Zajicek
It's really diifficult to know whether one of the new drugs is
helping
someone, as we can't be sure
what they'd be like if they weren't taking it. Copaxone isn't
associated
with increasing weakness
as far as I'm aware, so it could just be your underlying MS I'm
afraid. I'd
have a chat with your
own neurologist or MS nurse.
Netty
Can you tell us anything about the Cannabinoid trials?
Dr John Zajicek
The main study I'm organising is the CAMS study, which is
sponsored by MRC.
We're just
analysing the results form the first phase and hope to make
things public in
september (it's
taking longer to do the analysis than we hoped).
Paul
Hello John, I've heard that Cannabis may modulate the immune
system in
addition to providing
pain relief - what is your view on this?
Dr John Zajicek
Thanks Paul, we've done some work on the immune system
and it seems that in
order to affect
the immune system you probably need to take huge doses,
which would cause
major side
effects. We've got more results to analyse here. The more
exciting thing may
be that
cannabinoids may help to protect nerve cells, so they may be
helpful in
progressive disease.
We're designing trials to look at this at the moment.
Loz
Dr Zajicek, I know you are very involved in the Cannabis
research. Can you
tell us whether the
research is indicating whether MS sufferers will benefit from this
on
prescription? And if so, what
symptoms will benefit?
Dr John Zajicek
I'm afraid I don't know yet, you'll have to wait until the results
become
available in september.
Our statisticians are getting nagged by me on a daily basis to
speed up
their analysis!
Netty
Is the Cannabinoid trials to address the muscle spasm side of
MS or the
entire condition.
Dr John Zajicek
Mostly muscle stiffness (spasticity), but we're also looking at a
range of
other symptoms
including bladder, pain, tremor, mood, general disability, well-
being,
fatigue etc
Hamid Hosseini Hanvari:
I have had MS for 10 years. What is the latest drug that will help
me?
Dr John Zajicek
This depends on what sort of MS you've got. The major types of
drug
treatment are firstly for
relapses (steroids), secondly for symptoms (such as bladder
trouble,
stiffness etc), and thirdly to
try and modify the course of the disease (mostly drugs affecting
the immune
system such as
beta-interferon). We deperately need treatmenst for progressive
disease, and
that's what I'm
working on at the moment.
Question
Dr Zajicek you are optimistic about finding treatments for MS in
the near
future. I was confirmed
as having MS (PPMS) in 1991, and when I saw my Neurologist
last month, there
didn't seem to
have been anything discovered that would treat PPMS in the past
12 years.
Having been
confined to a wheelchair for 5 year