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#126 From: "Varanasi, Padma" <padma.varanasi@...>
Date: Mon Feb 23, 2009 7:33 am
Subject: FW: [Power4PALS] ALS Hero
pv_dc
Offline Offline
Send Email Send Email
 
Dear all,

This was aired on Channel 12 news.  It is quite a story of one of our heros.
Yes, we can!  Si se puede!

Check out the link below
http://www.wisn.com/video/18672977/index.html


- Padma
Click on the link below
Scott Pfeiffer
General Manager/Founder
920-226-0996

#125 From: "gauravjain_80" <gauravjain_80@...>
Date: Mon Feb 23, 2009 6:39 am
Subject: Movies on ALS
gauravjain_80
Offline Offline
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Here's the link to some movies on ALS:

http://www.spout.com/members/0/tags/als-lou-gehrigs-
disease/MemberTagFilms.aspx

Cheers.
G...

#124 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Feb 20, 2009 6:22 am
Subject: PACKARD CENTER UPDATE: Trials Of Cell-Based Therapy For ALS
gauravjain_80
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From: alscenter@...

To: The ALS Community

Date: February 18, 2009

Subject: Robert Packard Center ALS News Network

TRIALS OF CELL-BASED THERAPY DON'T COME OUT OF THE BLUE
Some thoughts on Geron's start of stem cell-based therapy for spinal
injury.

http://www.alscenter.org/news/briefs/090218.cfm

Late last month, ALS sufferers' hearts had to quicken at the
announcement by the biotech firm, Geron, hailing the start of
clinical trials of a stem cell-based therapy for new spinal injuries.

Though the trial is a Phase I study meant to see if injected cells
are safe for humans, and though its patient subjects have had their
very specific spinal cord injuries only one-to-two weeks, the
appearance of an authentic trial involving potentially therapeutic
cells - ones aimed at lessening or preventing paralysis - is exciting.

What about trying out those cells or similar ones for ALS injuries to
the nervous system?

"Packard researchers in this country and Europe are doing an enormous
amount of work to sort out the many steps necessary to discover which
cells to use one day in ALS patients," says Packard Director Jeffrey
Rothstein. "But even after that most essential work, after the
appropriate cell type stands well out from the others, questions
remain.

"These are not simply safety questions," Rothstein says: Many of our
ALS patients would be willing to try a new therapy and fully
understand the risks.

What needs answering are questions of benefit and of procedure. "How
do you administer the cells," he asks, "so the risk of getting them
is justified by their potential to relieve the disease or improve
quality of life?

"The impediments to our progress now are typical of what you'd
encounter for any potential new therapeutic drug," he explains. How
many cells are appropriate to deliver?
  That's the equivalent of finding the appropriate dose of a drug.

What's the best way to distribute the cells throughout the brain and
spinal cord? That is akin to asking how often you give a drug.

Do you give the cells through an IV or by direct surgical injection?
What happens to cells after we put them in? Do they divide like
tumors? Do they die and cause a scar that would hasten ALS
effects?  "Those are questions we must first sort out in animals,"
says Rothstein.

And a cell therapy carries its own unique concerns: How do we know
that the 'good' cells we put into one patient are identical to those
we'd culture and give a patient a year later? Quality assurance
issues are well-established for drugs like penicillin, Rothstein
adds, but they have to get worked out for every new type of stem cell.

The Packard Center has been doing its homework, however - not just
for its own scientists but for the world's.

A DECADE OF GROUNDWORK

For almost 10 years, our researchers have been laying the groundwork
for possible cell therapy for ALS. Many of their published studies
have likely influenced the Geron trial-planners.  Here are a few:

- Packard scientist Doug Kerr was the first to show that an animal
model of a paralytic disease could be helped by injections of stem
cells.
- Packard Director Jeff Rothstein and his team solidified the
suspicion that motor neurons' natural protectors are its neighboring
glial cells - that they remove harmful toxins as they collect in
nervous system tissues under assault. (The cells injected in the
Geron study have the potential to become glial cells, those
widespread nervous system cells in close proximity to motor neurons.)
- Work by Don Cleveland and Jean-Pierre Julien sent researchers
scurrying more surely to explore the concept of glial cells as
protectors. They revealed that keeping glia healthy can protect even
motor neurons carrying an ALS gene.
- Nicholas Maragakis and Mahendra Rao showed investigators everywhere
how to isolate, culture and precisely identify glial-restricted
precursor (GRP) cells - the broad class of "undeveloped" cells akin
to the cell types Geron is injecting.
- Maragakis and Rao demonstrated that GRPs are neuroprotective - both
in cultures that mimic the nervous system and in live animal models
of ALS. Maragakis and Rothstein have gone on to clarify much of the
underlying biology.

MORE RECENT WORK

Because they specialize in ALS biology, Packard scientists know to
target stem cell and related therapies where they'd potentially do
the most good. Last November, for example, they reported a key step,
an animal study in which they injected glial-restricted precursors
precisely around the cervical spinal cord home to motor neurons that
permit breathing. Paralysis of those neurons precipitates death in
ALS.

The rat ALS models in the study survived significantly longer. Their
forelimbs and breathing muscles stayed strong and functional far
longer, while motor neuron loss slowed. "This shows us that targeting
cell delivery to critical spinal areas is certainly worthy of
investigating as a therapy for ALS, as a way to slow specific types
of motor neuron loss," says researcher Nicholas Maragakis. Now work
needed to inch closer to clinical trials is underway.

* * *

In the last six months, Maragakis and colleague Hongjun Song have
been working at what can only be described as ALS's leading edge:
they've begun studying human pluripotent stem cells created from the
skin of a patient with familial ALS.

One of the few recent, legitimate scientific breakthroughs, the
technique involves reprogramming the patient's skin cells to behave
like stem cells. Then the stem cells are coaxed to become motor
neurons. This means that Packard scientists will be able to study the
progress of real ALS disease in real human cells, something that was
out of reach before.

___________________________________

About The Robert Packard Center for ALS Research at Johns Hopkins
www.alscenter.org

Located in Baltimore, the Robert Packard Center for ALS Research at
Johns Hopkins is a worldwide collaboration of scientists aimed at
developing therapies and a cure for amyotrophic lateral sclerosis
(ALS), also known as Lou Gehrig's disease.

The Center is the only institution of its kind dedicated solely to
the disease. Its research is meant to translate rapidly from the lab
bench to the clinic, largely by eliminating time spent waiting for
grants and lowering institutional barriers to sharing scientific
results.

Scientists and clinician members of the Packard Center have moved
drugs reliably and rapidly from preclinical experiments to human
trials. Direct or indirect links to international biotech or
pharmaceutical companies bring the infrastructure and experience
needed to make promising drugs into therapies.

Packard scientists are the first to propose and test a combination
approach to drug therapy, a tactic that has worked for AIDS, cancer
and other diseases.

ALS is a progressive, disabling neuromuscular disease that causes
complete paralysis and loss of function - including the ability to
eat, speak and breathe. ALS progresses quickly and is not curable.
Most patients die within five years of diagnosis.


_________________________________________
Rebecca Berger
Research Program Coordinator
Robert Packard Center for ALS Research at Johns Hopkins
5801 Smith Avenue | McAuley Suite 110
Baltimore, MD 21209
410.735.7678  direct
410.735.7680  fax
rberger6@...
www.alscenter.org
www.fiesta5K.org


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#123 From: "gauravjain_80" <gauravjain_80@...>
Date: Thu Feb 19, 2009 7:18 am
Subject: Existing Symptoms?
gauravjain_80
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Dear all,
Hope your ALS loved one is doing fine?
Please do post their symptoms so that we can help each other.
At times, you would be surprised as to how small small things can make
a difference.

E.g. If your ALS patient cannot control his/ her neck anymore, one can
get a head rest made from any local welding shop, get foam put on it
from a local foam shop. Make spoace for their head to get fixed into
it...This can be attcahed to their wheel chair or any normal chair they
sit on.
This way, your loved one can hold their neck upright and watch TV, talk
to you without any problem.

This is just 1 small tips, I am sure all of you have great tips at ur
ends too.
Please share...
That is the whole idea why this group exists.

Regards,
Gaurav.

#122 From: tania dandona <tdandona@...>
Date: Mon Feb 16, 2009 11:51 am
Subject: Re: Rilutek is available
tdandona
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Hey Gaurav,
 
Can you please send me more details on the biap and suction device which you have avaliable at discounted price. Like how much is it for? which model & make? Its a new one? Can u send me a picture?
 
Thanks,
 
Tania


--- On Fri, 13/2/09, gauravjain_80 <gauravjain_80@...> wrote:
From: gauravjain_80 <gauravjain_80@...>
Subject: [ALS_India] Rilutek is available
To: ALS_India@yahoogroups.com
Date: Friday, 13 February, 2009, 11:45 AM

Hey all,
I have some 2-3 boxes of Rilutek with me.
If anyone wants, I can courier it to them....

Let me know....
Also, I have a Suction Machine and a Bi Pap available at discounted
prices...

Spread the word...

Cheers to all.
Hope everyone is doin fine n in gr8 spirits...

Cheers.
Gaurav...



Add more friends to your messenger and enjoy! Invite them now.

#121 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Feb 13, 2009 6:22 am
Subject: Participate in the Poll
gauravjain_80
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Go to Polls section and participate in the poll pls.

Regards,
Gaurav

#120 From: ALS_India@yahoogroups.com
Date: Fri Feb 13, 2009 6:21 am
Subject: New poll for ALS_India
ALS_India@yahoogroups.com
Send Email Send Email
 
Enter your vote today!  A new poll has been created for the
ALS_India group:

If due to some reason, your loved one suffering with ALS
goes into a state of comma or Unconsciousness wherein
chances of recovery are there but very minimal...
What would you do???

(No option given below is wrong, it solely depends upon
a caretaker's situation and capacity to sustain)

   o Provide 100% ventilatory system: Wait and watch
   o Take up responsibility: Remove support and end their ordeal
   o Take them off medication: let nature take its course


To vote, please visit the following web page:
http://groups.yahoo.com/group/ALS_India/surveys?id=2156234

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

#119 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Feb 13, 2009 6:15 am
Subject: Rilutek is available
gauravjain_80
Offline Offline
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Hey all,
I have some 2-3 boxes of Rilutek with me.
If anyone wants, I can courier it to them....

Let me know....
Also, I have a Suction Machine and a Bi Pap available at discounted
prices...

Spread the word...

Cheers to all.
Hope everyone is doin fine n in gr8 spirits...

Cheers.
Gaurav...

#118 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Jan 9, 2009 8:13 am
Subject: How successful are alternative therapies in giving relief to ALS patients?
gauravjain_80
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Therapies like Aurvedic treatment, Homeopathy, Masssages, Accupressure,
Accupuncture etc..

Cast your vote on

http://www.orkut.co.in/Main#CommPollVote.aspx?
cmm=30978378&pct=1231463436&pid=893089494.

Poll ends 30th Jan, 09.

Let's spread awareness !!!!
That is step 1 towards bringing everyone together who have been
affected by ALS...

#117 From: "gauravjain_80" <gauravjain_80@...>
Date: Wed Jan 7, 2009 10:44 am
Subject: Happy New Year to everyone...God bless...
gauravjain_80
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To all my fellow PALS and CALS.
Here's wishing you all a very happy new year.
Hope this year brings with itself great discoveries that eliminate
ALS and similar diseases from this world.

Below is the email from ALS Association, US.


Dear Gaurav,

When the clock strikes midnight on December 31st, people throughout
the world will cheer and wish each other a very Happy New Year.  This
event is more than a change of a calendar.  For most, the start of
the New Year symbolizes the beginning of a better tomorrow. Who
doesn't long for a second chance, a fresh start, the chance to repair
an injustice, or for another embrace from a loved one?

With the radical shift in our economy, 2008 was a year that many
people of our nation experienced an abrupt change in their life's
plan. Those of us affected by ALS can empathize.  We can understand
being blown off-course, and suddenly cast into uncharted waters with
little guidance or hope.  At times like this, we all must take a deep
breath and focus on what is truly important.  We are all so fortunate
to have found one another under such challenging circumstances.

Looking ahead to 2009, let's renew our commitment to our mission
statement and refocus on our vision.  The ALS Association is the only
non-profit organization fighting Lou Gehrig's Disease on every
front.  By leading the way in global research, providing assistance
for people with ALS through a nationwide network of chapters,
coordinating multidisciplinary care through certified clinical care
centers, and fostering government partnerships, The Association
builds hope and enhances quality of life while aggressively searching
for new treatments and a cure.

Never forget that The Greater Bay Area Chapter is here to support and
to advocate for your needs now, while leading the fight for the cure.
We are here to help you care for and honor your loved ones.  By
subscribing to and forwarding our monthly eNewsletter, we can keep
you informed of breaking news, support groups, our Walks and Rides,
and important events in the fight to defeat ALS.

We will never, ever give up  You, Gaurav, are a part of that effort.
And together, united, we will triumph.

From all of us at The ALS Association Greater Bay Area Chapter, thank
you for all of your support and dedication in 2008.

We wish to you a very Happy New Year.


Linda M. de Mello
President and CEO
The ALS Association
Greater Bay Area Chapter

#116 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Dec 26, 2008 8:11 am
Subject: ALS / MND India on Faceboook
gauravjain_80
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Have started a new facebook group called ALS / MND India.

http://www.facebook.com/home.php#/group.php?gid=42158708100


Another platform to spread our message of awareness regarding this evil
disease.

Regards,
GJ...

#115 From: Srivatsan Balasubramanian <srivatsan_b@...>
Date: Thu Dec 25, 2008 8:11 am
Subject: Re: Re: In need of riluzole immediately
srivatsan_b
Offline Offline
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Gaurav and Vamsy,

thanks for your prompt emails. Since we already got help through some other channels, we are good for now. Thanks again though.

Sri

Some of the best God given gifts are those numerous unanswered prayers - Anonymous

--- On Tue, 12/23/08, gauravjain_80 <gauravjain_80@...> wrote:
From: gauravjain_80 <gauravjain_80@...>
Subject: [ALS_India] Re: In need of riluzole immediately
To: ALS_India@yahoogroups.com
Date: Tuesday, December 23, 2008, 11:34 AM

Hey Vamsy,
Good to hear from you.

I have still not recovered from my Dad's demise. I know what you must
be goin thru.
Hang in there my fren. Time is is the biggest healer.
Rber him for what he wud have wanted you 2 do at present.
I know my Dad wud want 2 see me happy n smiling always...So i m
trying to do the same..

Somehow situations in life teach u so many things and change ur
perspective completely.. .
Like all of us coming together to be a paRT OF this group so that we
can help each other and many more who face the evils of this horible
disease.
Finally life has found a purpose I think...I am so thankful to my Dad
for giving me a meaningful purpose in this life...

In case Sri doesn't want it, I would appreciate if you keep the
Riluzole with yourself so that in future, if someone in South India
needs it, we can send it to them. I have the Northern India covered.
Same goes for any other instruments etc (if you don't wish to donate
them to someone in need).

Tc my fren...
Welcome bac to the group...
Feel free to share all that u want 2...
I am all ears..

Love n regards....

Gaurav...

--- In ALS_India@yahoogrou ps.com, vamsi krishna <vamsy_007@. ..> wrote:
>
> Hi All,
>
> Its been long time that I have mailed again to this group.
>
> After my Dad's, my moods are pretty bad and I am taking my time to
get back. Going thru a very rough patch of my life. Thanks to all
the dudes who helped me a lot and who wrote to my during these days
asking about my well being.
>
> Sri,
>
> I have riluzole with me and I can send them to you. I hope u still
need them. I can mail them to ur place. Just confirm incase if you
dont need them and if u already has received them through any other
dudes of the group.
>
> Thanks all again for the beautiful support that you are giving to
each other at the time of need. Will be in touch from now and will
post what all info that I have with me.
>
> urs
> Vamsi
>
>
>
>
> ____________ _________ _________ __
> From: gauravjain_80 <gauravjain_ 80@...>
> To: ALS_India@yahoogrou ps.com
> Sent: Tuesday, 23 December, 2008 11:26:48
> Subject: [ALS_India] Re: In need of riluzole immediately
>
>
> NO problem.
> Let me know if you need any other info or help.
> This group and its members are here to help you deal with this
> disease and take necessary measures to live with it.
>
> Regards,
> G...
>
> --- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
> <srivatsan_b@ ...> wrote:
> >
> > Gaurav,
> >
> > I happened to find somebody here who could help me with this
> temporarily. So, if you have not already sent it by now, pls don't
> worry about it. I really appreciate your time and efforts.
> >
> > Thankx much
> > Sri
> >
> > Some of the best God given gifts are those numerous unanswered
> prayers - Anonymous
> >
> > --- On Mon, 12/22/08, gauravjain_80 <gauravjain_ 80@> wrote:
> > From: gauravjain_80 <gauravjain_ 80@>
> > Subject: [ALS_India] Re: In need of riluzole immediately
> > To: ALS_India@yahoogrou ps.com
> > Date: Monday, December 22, 2008, 12:40 PM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Hi Sri....
> >
> > I am on it...
> >
> > Let me see how soon I can get it for you...
> >
> >
> >
> > Will keep u updated...
> >
> >
> >
> > regards,
> >
> > Gaurav
> >
> > 98999 69781...
> >
> >
> >
> > --- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
> >
> > <srivatsan_b@ ...> wrote:
> >
> > >
> >
> > > Hello guys,
> >
> > >
> >
> > > My father was diagnosed with ALS two months ago at NIMHANS,
> >
> > Bangalore, and has been on riluzole ever since. It has helped him
a
> >
> > lot since I noticed that his situation becomes worse whenever he
is
> >
> > off of it. A couple of days ago, he lost his Riluzole tables
while
> he
> >
> > was traveling to his native village, and his condition is
degrading
> >
> > rapidly because of that. We used to get his riluzole tablets at a
> >
> > local store, but they typically take more than two weeks to get
the
> >
> > tablets, but I need them right now since his mobility is
degrading
> >
> > very rapidly.
> >
> > >
> >
> > > I am wondering if it is possible for anybody here to be kind
> enough
> >
> > to send a couple of tablets (20 or so) to the below mentioned
> >
> > address so that he could use them until the new batch arrives. We
> can
> >
> > be contacted at 988-621-4333.
> >
> > >
> >
> > > V. Balasubramanian
> >
> > > 6, manathattai agraharam
> >
> > > kulithalai
> >
> > > tamil nadu
> >
> > > 639 104
> >
> > > karur district
> >
> > > ph no: 04323-222535
> >
> > >
> >
> > > Thanks
> >
> > > Srivatsan
> >
> > >
> >
> > > Some of the best God given gifts are those numerous unanswered
> >
> > prayers - Anonymous
> >
> > >
> >
>



#114 From: "gauravjain_80" <gauravjain_80@...>
Date: Thu Dec 25, 2008 7:02 am
Subject: Merry Christmas and a Happy New Year
gauravjain_80
Offline Offline
Send Email Send Email
 
Dear all,
Here's wishing you a very Merry Christmas.
May this special day bring a smile on all your faces.

God bless u all and here's looking forward to a new year which is
filled with best of health and peace for all of us.

Tc of urself and ur loved ones...

Regards,
G xxx..

#113 From: "gauravjain_80" <gauravjain_80@...>
Date: Tue Dec 23, 2008 6:34 am
Subject: Re: In need of riluzole immediately
gauravjain_80
Offline Offline
Send Email Send Email
 
Hey Vamsy,
Good to hear from you.

I have still not recovered from my Dad's demise. I know what you must
be goin thru.
Hang in there my fren. Time is is the biggest healer.
Rber him for what he wud have wanted you 2 do at present.
I know my Dad wud want 2 see me happy n smiling always...So i m
trying to do the same..

Somehow situations in life teach u so many things and change ur
perspective completely...
Like all of us coming together to be a paRT OF this group so that we
can help each other and many more who face the evils of this horible
disease.
Finally life has found a purpose I think...I am so thankful to my Dad
for giving me a meaningful purpose in this life...

In case Sri doesn't want it, I would appreciate if you keep the
Riluzole with yourself so that in future, if someone in South India
needs it, we can send it to them. I have the Northern India covered.
Same goes for any other instruments etc (if you don't wish to donate
them to someone in need).

Tc my fren...
Welcome bac to the group...
Feel free to share all that u want 2...
I am all ears..

Love n regards....

Gaurav...


--- In ALS_India@yahoogroups.com, vamsi krishna <vamsy_007@...> wrote:
>
> Hi All,
>
> Its been long time that I have mailed again to this group.
>
> After my Dad's, my moods are pretty bad and I am taking my time to
get back.  Going thru a very rough patch of my life.  Thanks to all
the dudes who helped me a lot and who wrote to my during these days
asking about my well being.
>
> Sri,
>
> I have riluzole with me and I can send them to you.  I hope u still
need them.  I can mail them to ur place.  Just confirm incase if you
dont need them and if u already has received them through any other
dudes of the group.
>
> Thanks all again for the beautiful support that you are giving to
each other at the time of need.  Will be in touch from now and will
post what all info that I have with me.
>
> urs
> Vamsi
>
>
>
>
> ________________________________
> From: gauravjain_80 <gauravjain_80@...>
> To: ALS_India@yahoogroups.com
> Sent: Tuesday, 23 December, 2008 11:26:48
> Subject: [ALS_India] Re: In need of riluzole immediately
>
>
> NO problem.
> Let me know if you need any other info or help.
> This group and its members are here to help you deal with this
> disease and take necessary measures to live with it.
>
> Regards,
> G...
>
> --- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
> <srivatsan_b@ ...> wrote:
> >
> > Gaurav,
> >
> > I happened to find somebody here who could help me with this
> temporarily. So, if you have not already sent it by now, pls don't
> worry about it. I really appreciate your time and efforts.
> >
> > Thankx much
> > Sri
> >
> > Some of the best God given gifts are those numerous unanswered
> prayers - Anonymous
> >
> > --- On Mon, 12/22/08, gauravjain_80 <gauravjain_ 80@> wrote:
> > From: gauravjain_80 <gauravjain_ 80@>
> > Subject: [ALS_India] Re: In need of riluzole immediately
> > To: ALS_India@yahoogrou ps.com
> > Date: Monday, December 22, 2008, 12:40 PM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >             Hi Sri....
> >
> > I am on it...
> >
> > Let me see how soon I can get it for you...
> >
> >
> >
> > Will keep u updated...
> >
> >
> >
> > regards,
> >
> > Gaurav
> >
> > 98999 69781...
> >
> >
> >
> > --- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
> >
> > <srivatsan_b@ ...> wrote:
> >
> > >
> >
> > > Hello guys,
> >
> > >
> >
> > > My father was diagnosed with ALS two months ago at NIMHANS,
> >
> > Bangalore, and has been on riluzole ever since. It has helped him
a
> >
> > lot since I noticed that his situation becomes worse whenever he
is
> >
> > off of it. A couple of days ago, he lost his Riluzole tables
while
> he
> >
> > was traveling to his native village, and his condition is
degrading
> >
> > rapidly because of that. We used to get his riluzole tablets at a
> >
> > local store, but they typically take more than two weeks to get
the
> >
> > tablets, but I need them right now since his mobility is
degrading
> >
> > very rapidly.
> >
> > >
> >
> > > I am wondering if it is possible for anybody here to be kind
> enough
> >
> > to send a couple of tablets  (20 or so) to the below mentioned
> >
> > address so that he could use them until the new batch arrives. We
> can
> >
> > be contacted at 988-621-4333.
> >
> > >
> >
> > > V. Balasubramanian
> >
> > > 6, manathattai agraharam
> >
> > > kulithalai
> >
> > > tamil nadu
> >
> > > 639 104
> >
> > > karur district
> >
> > > ph no: 04323-222535
> >
> > >
> >
> > > Thanks
> >
> > > Srivatsan
> >
> > >
> >
> > > Some of the best God given gifts are those numerous unanswered
> >
> > prayers - Anonymous
> >
> > >
> >
>

#112 From: vamsi krishna <vamsy_007@...>
Date: Tue Dec 23, 2008 6:24 am
Subject: Re: Re: In need of riluzole immediately
vamsy_007
Offline Offline
Send Email Send Email
 
Hi All,

Its been long time that I have mailed again to this group. 

After my Dad's, my moods are pretty bad and I am taking my time to get back.  Going thru a very rough patch of my life.  Thanks to all the dudes who helped me a lot and who wrote to my during these days asking about my well being. 

Sri,

I have riluzole with me and I can send them to you.  I hope u still need them.  I can mail them to ur place.  Just confirm incase if you dont need them and if u already has received them through any other dudes of the group.

Thanks all again for the beautiful support that you are giving to each other at the time of need.  Will be in touch from now and will post what all info that I have with me.

urs
Vamsi


From: gauravjain_80 <gauravjain_80@...>
To: ALS_India@yahoogroups.com
Sent: Tuesday, 23 December, 2008 11:26:48
Subject: [ALS_India] Re: In need of riluzole immediately

NO problem.
Let me know if you need any other info or help.
This group and its members are here to help you deal with this
disease and take necessary measures to live with it.

Regards,
G...

--- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
<srivatsan_b@ ...> wrote:
>
> Gaurav,
>
> I happened to find somebody here who could help me with this
temporarily. So, if you have not already sent it by now, pls don't
worry about it. I really appreciate your time and efforts.
>
> Thankx much
> Sri
>
> Some of the best God given gifts are those numerous unanswered
prayers - Anonymous
>
> --- On Mon, 12/22/08, gauravjain_80 <gauravjain_ 80@...> wrote:
> From: gauravjain_80 <gauravjain_ 80@...>
> Subject: [ALS_India] Re: In need of riluzole immediately
> To: ALS_India@yahoogrou ps.com
> Date: Monday, December 22, 2008, 12:40 PM
>
>
>
>
>
>
>
>
>
>
>
> Hi Sri....
>
> I am on it...
>
> Let me see how soon I can get it for you...
>
>
>
> Will keep u updated...
>
>
>
> regards,
>
> Gaurav
>
> 98999 69781...
>
>
>
> --- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
>
> <srivatsan_b@ ...> wrote:
>
> >
>
> > Hello guys,
>
> >
>
> > My father was diagnosed with ALS two months ago at NIMHANS,
>
> Bangalore, and has been on riluzole ever since. It has helped him a
>
> lot since I noticed that his situation becomes worse whenever he is
>
> off of it. A couple of days ago, he lost his Riluzole tables while
he
>
> was traveling to his native village, and his condition is degrading
>
> rapidly because of that. We used to get his riluzole tablets at a
>
> local store, but they typically take more than two weeks to get the
>
> tablets, but I need them right now since his mobility is degrading
>
> very rapidly.
>
> >
>
> > I am wondering if it is possible for anybody here to be kind
enough
>
> to send a couple of tablets (20 or so) to the below mentioned
>
> address so that he could use them until the new batch arrives. We
can
>
> be contacted at 988-621-4333.
>
> >
>
> > V. Balasubramanian
>
> > 6, manathattai agraharam
>
> > kulithalai
>
> > tamil nadu
>
> > 639 104
>
> > karur district
>
> > ph no: 04323-222535
>
> >
>
> > Thanks
>
> > Srivatsan
>
> >
>
> > Some of the best God given gifts are those numerous unanswered
>
> prayers - Anonymous
>
> >
>



#111 From: "gauravjain_80" <gauravjain_80@...>
Date: Tue Dec 23, 2008 6:08 am
Subject: You tube Videos on ALS
gauravjain_80
Offline Offline
Send Email Send Email
 
Some videos on ALS...
http://in.youtube.com/results?
search_query=amyotrophic+lateral+sclerosis&search_type=&aq=0


The following one is heart breaking but true....

http://www.youtube. com/watch? v=g0Q4kIx95aU

Tc everyone...

G xxxx...





"Head and Shoulders Knees and Toes" Canadian PSA

The ALS Society of Canada has launched a new public service
advertising campaign created by Lowe Roche, Toronto to raise
awareness about Amyotrophic Lateral Sclerosis (ALS) and the ALS
Society's efforts to fund research towards a cure for the disease.

Created by Lowe Roche on a pro bono basis, the 60-second television
public service announcement, "Head and Shoulders" is composed of a
montage of clips, each one focusing on a man with ALS in emotionally
charged moments as his disease advances to different parts of his
body. Set to the children's song, "Head and Shoulders, Knees and
Toes", as the spot progresses, and his conditions worsen, the
cheerful singing becomes a sad whisper.

"We chose to create a spot that was musically and emotionally driven
to raise awareness for ALS," said Christina Yu, Vice President,
Creative Director, Lowe Roche.

"This song is one which everybody can relate to and we wanted to use
it unconventionally to illustrate how this disease eventually affects
every body part ALS, also known as Lou Gehrig's disease, is a rapidly
progressive and fatal neuromuscular disease that causes the
degeneration of nerve cells in the brain and spinal cord. As the
nerve cells die, people with ALS lose control of their muscles, which
makes breathing, eating and even smiling almost impossible. Eighty
per cent
of those diagnosed will die within two to five years. There is no
known cure or effective treatment of ALS.

"Lowe Roche has created a very powerful commercial that we think will
help the public better understand what ALS is all about," explains
Bobbi Greenberg, Director of Communications, ALS Society of
Canada. "We're very appreciative of their dedication to this project
and of those who donated their time and services during the
production process. We're certain that their efforts will help us
raise the funds we desperately need to proceed with research
initiatives that will ultimately help us find effective therapies and
a cure for this devastating disease

#110 From: "gauravjain_80" <gauravjain_80@...>
Date: Tue Dec 23, 2008 5:56 am
Subject: Re: In need of riluzole immediately
gauravjain_80
Offline Offline
Send Email Send Email
 
NO problem.
Let me know if you need any other info or help.
This group and its members are here to help you deal with this
disease and take necessary measures to live with it.

Regards,
G...

--- In ALS_India@yahoogroups.com, Srivatsan Balasubramanian
<srivatsan_b@...> wrote:
>
> Gaurav,
>
> I happened to find somebody here who could help me with this
temporarily. So, if you have not already sent it by now, pls don't
worry about it. I really appreciate your time and efforts.
>
> Thankx much
> Sri
>
> Some of the best God given gifts are those numerous unanswered
prayers - Anonymous
>
> --- On Mon, 12/22/08, gauravjain_80 <gauravjain_80@...> wrote:
> From: gauravjain_80 <gauravjain_80@...>
> Subject: [ALS_India] Re: In need of riluzole immediately
> To: ALS_India@yahoogroups.com
> Date: Monday, December 22, 2008, 12:40 PM
>
>
>
>
>
>
>
>
>
>
>
>             Hi Sri....
>
> I am on it...
>
> Let me see how soon I can get it for you...
>
>
>
> Will keep u updated...
>
>
>
> regards,
>
> Gaurav
>
> 98999 69781...
>
>
>
> --- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
>
> <srivatsan_b@ ...> wrote:
>
> >
>
> > Hello guys,
>
> >
>
> > My father was diagnosed with ALS two months ago at NIMHANS,
>
> Bangalore, and has been on riluzole ever since. It has helped him a
>
> lot since I noticed that his situation becomes worse whenever he is
>
> off of it. A couple of days ago, he lost his Riluzole tables while
he
>
> was traveling to his native village, and his condition is degrading
>
> rapidly because of that. We used to get his riluzole tablets at a
>
> local store, but they typically take more than two weeks to get the
>
> tablets, but I need them right now since his mobility is degrading
>
> very rapidly.
>
> >
>
> > I am wondering if it is possible for anybody here to be kind
enough
>
> to send a couple of tablets  (20 or so) to the below mentioned
>
> address so that he could use them until the new batch arrives. We
can
>
> be contacted at 988-621-4333.
>
> >
>
> > V. Balasubramanian
>
> > 6, manathattai agraharam
>
> > kulithalai
>
> > tamil nadu
>
> > 639 104
>
> > karur district
>
> > ph no: 04323-222535
>
> >
>
> > Thanks
>
> > Srivatsan
>
> >
>
> > Some of the best God given gifts are those numerous unanswered
>
> prayers - Anonymous
>
> >
>

#109 From: Srivatsan Balasubramanian <srivatsan_b@...>
Date: Tue Dec 23, 2008 3:59 am
Subject: Re: Re: In need of riluzole immediately
srivatsan_b
Offline Offline
Send Email Send Email
 
Gaurav,

I happened to find somebody here who could help me with this temporarily. So, if you have not already sent it by now, pls don't worry about it. I really appreciate your time and efforts.

Thankx much
Sri

Some of the best God given gifts are those numerous unanswered prayers - Anonymous

--- On Mon, 12/22/08, gauravjain_80 <gauravjain_80@...> wrote:
From: gauravjain_80 <gauravjain_80@...>
Subject: [ALS_India] Re: In need of riluzole immediately
To: ALS_India@yahoogroups.com
Date: Monday, December 22, 2008, 12:40 PM

Hi Sri....
I am on it...
Let me see how soon I can get it for you...

Will keep u updated...

regards,
Gaurav
98999 69781...

--- In ALS_India@yahoogrou ps.com, Srivatsan Balasubramanian
<srivatsan_b@ ...> wrote:
>
> Hello guys,
>
> My father was diagnosed with ALS two months ago at NIMHANS,
Bangalore, and has been on riluzole ever since. It has helped him a
lot since I noticed that his situation becomes worse whenever he is
off of it. A couple of days ago, he lost his Riluzole tables while he
was traveling to his native village, and his condition is degrading
rapidly because of that. We used to get his riluzole tablets at a
local store, but they typically take more than two weeks to get the
tablets, but I need them right now since his mobility is degrading
very rapidly.
>
> I am wondering if it is possible for anybody here to be kind enough
to send a couple of tablets (20 or so) to the below mentioned
address so that he could use them until the new batch arrives. We can
be contacted at 988-621-4333.
>
> V. Balasubramanian
> 6, manathattai agraharam
> kulithalai
> tamil nadu
> 639 104
> karur district
> ph no: 04323-222535
>
> Thanks
> Srivatsan
>
> Some of the best God given gifts are those numerous unanswered
prayers - Anonymous
>



#108 From: "gauravjain_80" <gauravjain_80@...>
Date: Mon Dec 22, 2008 7:40 am
Subject: Re: In need of riluzole immediately
gauravjain_80
Offline Offline
Send Email Send Email
 
Hi Sri....
I am on it...
Let me see how soon I can get it for you...

Will keep u updated...

regards,
Gaurav
98999 69781...


--- In ALS_India@yahoogroups.com, Srivatsan Balasubramanian
<srivatsan_b@...> wrote:
>
> Hello guys,
>
> My father was diagnosed with ALS two months ago at NIMHANS,
Bangalore, and has been on riluzole ever since. It has helped him a
lot since I noticed that his situation becomes worse whenever he is
off of it. A couple of days ago, he lost his Riluzole tables while he
was traveling to his native village, and his condition is degrading
rapidly because of that. We used to get his riluzole tablets at a
local store, but they typically take more than two weeks to get the
tablets, but I need them right now since his mobility is degrading
very rapidly.
>
> I am wondering if it is possible for anybody here to be kind enough
to send a couple of tablets  (20 or so) to the below mentioned
address so that he could use them until the new batch arrives. We can
be contacted at 988-621-4333.
>
> V. Balasubramanian
> 6, manathattai agraharam
> kulithalai
> tamil nadu
> 639 104
> karur district
> ph no: 04323-222535
>
> Thanks
> Srivatsan
>
> Some of the best God given gifts are those numerous unanswered
prayers - Anonymous
>

#107 From: Srivatsan Balasubramanian <srivatsan_b@...>
Date: Sun Dec 21, 2008 2:19 pm
Subject: In need of riluzole immediately
srivatsan_b
Offline Offline
Send Email Send Email
 
Hello guys,

My father was diagnosed with ALS two months ago at NIMHANS, Bangalore, and has
been on riluzole ever since. It has helped him a lot since I noticed that his
situation becomes worse whenever he is off of it. A couple of days ago, he lost
his Riluzole tables while he was traveling to his native village, and his
condition is degrading rapidly because of that. We used to get his riluzole
tablets at a local store, but they typically take more than two weeks to get the
tablets, but I need them right now since his mobility is degrading very rapidly.

I am wondering if it is possible for anybody here to be kind enough to send a
couple of tablets  (20 or so) to the below mentioned address so that he could
use them until the new batch arrives. We can be contacted at 988-621-4333.

V. Balasubramanian
6, manathattai agraharam
kulithalai
tamil nadu
639 104
karur district
ph no: 04323-222535

Thanks
Srivatsan

Some of the best God given gifts are those numerous unanswered prayers -
Anonymous

#106 From: "gauravjain_80" <gauravjain_80@...>
Date: Wed Dec 17, 2008 9:26 am
Subject: some more info
gauravjain_80
Offline Offline
Send Email Send Email
 
Tips for Newly-Diagnosed ALS Patients from Will Hubben

http://www.alsa.org/community/article.cfm?
id=383&CFID=276498&CFTOKEN=3618783

#105 From: Gopala Krishna Gokeda <gokeda@...>
Date: Fri Dec 5, 2008 5:46 pm
Subject: Re: Re: Good site to browse thru
gokeda
Offline Offline
Send Email Send Email
 
Thank you Gaurav,
 
That's really helpful. I guess, in our situation, we tend to build up hopes and beliefs soon.
 
Gopal
 


--- On Fri, 12/5/08, gauravjain_80 <gauravjain_80@...> wrote:
From: gauravjain_80 <gauravjain_80@...>
Subject: [ALS_India] Re: Good site to browse thru
To: ALS_India@yahoogroups.com
Date: Friday, December 5, 2008, 1:06 PM

Hi Gopal.
This is a scam.
I had it checked while I was doing my research.
I spoke to a couple of CALS who confirmed that this is a money
minting facility with absolutely no care or concern for ALS.
What they portray online is nothing in reality.

A friend of mine (a fellow CALS) had taken her bro to the same from
Australia. He was mortified after seeing that it was worse than a
govt hospital and there is no guarantee that they can or claim to
cure ALS.
I am sorry for giving you the bad news but it's better to be away
from such hospitals cos in the long run they not only cause financial
damage but also are very demotivating for the patient and the
caretaker.

Another scam is Mototab, made in Scotland or Norway. You can get more
info from Lalit.
I actually sent a friend of mine who was living in Scotland to
collect the drug for my father. He came back with the reply that the
address is just a mailbox and there is no person on the same.

I will keep everyone posted for anymore scams I come across.
I was also doing some research on Monocycline but the docs have
claimed that it cannot cure or prolong ALS.

Tc everyone...

G....

-- In ALS_India@yahoogrou ps.com, Gopala Krishna Gokeda <gokeda@...>
wrote:
>
> http://www.tcmtreat ment.com/ images/diseases/ ALS-Report. htm
>
> Anybody have any thoughts on this. Looks very convincing for me.
> Anybody knows any contacts in China that I can talk and discuss
further.
> Please advise on how to proceed with this if I chose to take my
parents to China.
>
> Thanks
>
> Gopal
>



#104 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Dec 5, 2008 6:08 am
Subject: ALS Scams
gauravjain_80
Offline Offline
Send Email Send Email
 
Please visit the following for more info on ALS scams.
There are tons of people out there who would want to make a quick buck
at the cost of someone's health or vulnerable position.

It is our duty to inform such things to everyone else.

http://www.alsforums.com/scamwatch/

Regards,
Gxxx

#103 From: "gauravjain_80" <gauravjain_80@...>
Date: Fri Dec 5, 2008 6:06 am
Subject: Re: Good site to browse thru
gauravjain_80
Offline Offline
Send Email Send Email
 
Hi Gopal.
This is a scam.
I had it checked while I was doing my research.
I spoke to a couple of CALS who confirmed that this is a money
minting facility with absolutely no care or concern for ALS.
What they portray online is nothing in reality.

A friend of mine (a fellow CALS) had taken her bro to the same from
Australia. He was mortified after seeing that it was worse than a
govt hospital and there is no guarantee that they can or claim to
cure ALS.
I am sorry for giving you the bad news but it's better to be away
from such hospitals cos in the long run they not only cause financial
damage but also are very demotivating for the patient and the
caretaker.

Another scam is Mototab, made in Scotland or Norway. You can get more
info from Lalit.
I actually sent  a friend of mine who was living in Scotland to
collect the drug for my father. He came back with the reply that the
address is just a mailbox and there is no person on the same.

I will keep everyone posted for anymore scams I come across.
I was also doing some research on Monocycline but the docs have
claimed that it cannot cure or prolong ALS.

Tc everyone...

G....




-- In ALS_India@yahoogroups.com, Gopala Krishna Gokeda <gokeda@...>
wrote:
>
> http://www.tcmtreatment.com/images/diseases/ALS-Report.htm
>
> Anybody have any thoughts on this. Looks very convincing for me.
> Anybody knows any contacts in China that I can talk and discuss
further.
> Please advise on how to proceed with this if I chose to take my
parents to China.
>
> Thanks
>
> Gopal
>

#102 From: Gopala Krishna Gokeda <gokeda@...>
Date: Thu Dec 4, 2008 3:53 am
Subject: Re: Good site to browse thru
gokeda
Offline Offline
Send Email Send Email
 
http://www.tcmtreatment.com/images/diseases/ALS-Report.htm

Anybody have any thoughts on this. Looks very convincing for me.
Anybody knows any contacts in China that I can talk and discuss further.
Please advise on how to proceed with this if I chose to take my parents to China.

Thanks

Gopal




#101 From: "gauravjain_80" <gauravjain_80@...>
Date: Mon Dec 1, 2008 9:20 am
Subject: Good site to browse thru
gauravjain_80
Offline Offline
Send Email Send Email
 
A great site to look at while educating young teens or children with
ALS and its effects.

http://www.als411.ca/

Thanks to my freinds in other ALS networks.

#100 From: "gauravjain_80" <gauravjain_80@...>
Date: Mon Dec 1, 2008 9:15 am
Subject: How are you?
gauravjain_80
Offline Offline
Send Email Send Email
 
Hello all,
How is everyone doing?
HOpe you and your loved ones are ok and tc of each other.

Feel free to send in any ALS queries to the forum and we can get
together and answer them.

Tc..
Gaurav..
P.S. I am sure I told you this before but in case I haven't, I have
officially become the first International Ambassador for ALS Therapy
Development Institute based in US. Still trying to figure out how we
can get their help in expanding our group and providing more info to
everyone out there who needs it....
Tc....God bless...

#99 From: "gauravjain_80" <gauravjain_80@...>
Date: Sat Nov 8, 2008 5:08 am
Subject: Re: Books on ALS
gauravjain_80
Offline Offline
Send Email Send Email
 
Hi Lalit,
If you can send me a xerox of the same, I would appreciate it...
Or else, you can give me the book store details in Noida and I can
get it picked up.

My address is:
Gaurav Jain
House No. 790, Sector 4,
Urban Estate,
Gurgaon. 122001
Haryana.

Thanks a ton...
Let me know whatever you decide.
How is your Dad doing??

Tc....
GJ...


--- In ALS_India@yahoogroups.com, "Lalit Kumar" <lalitgupta907@...>
wrote:
>
> hello gaurav sir
> I HAVE GOT THIS BOOK FROM US from A1 books...ITS also available in
noida...U
> can find it easily ,if any one need urgently i can send a photocopy
of Eric
> is winning..
>
> lalit
>
> On Thu, Nov 6, 2008 at 3:51 PM, gauravjain_80
<gauravjain_80@...>wrote:
>
> >   Hello all,
> > Any idea where in India, can we can find books on ALS?
> >
> > I tried finding Eric is Winning but could not find it with the
Book
> > stores in Delhi or in Gurgaon?
> >
> > They were available on Amazon but the shipping would of course
take
> > more time.
> >
> > Do let me know pls..
> >
> > Thanks.
> > GJ...
> >
> > P.S. I miss him everyday, it still hasn't sunk in that he's not
there
> > anymore..Can only see me from Heaven..
> >
> >
> >
>

#98 From: "Lalit Kumar" <lalitgupta907@...>
Date: Fri Nov 7, 2008 4:35 am
Subject: Re: Books on ALS
lalit_gupta907
Offline Offline
Send Email Send Email
 
hello gaurav sir
I HAVE GOT THIS BOOK FROM US from A1 books...ITS also available in noida...U can find it easily ,if any one need urgently i can send a photocopy of Eric is winning..
 
lalit

On Thu, Nov 6, 2008 at 3:51 PM, gauravjain_80 <gauravjain_80@...> wrote:

Hello all,
Any idea where in India, can we can find books on ALS?

I tried finding Eric is Winning but could not find it with the Book
stores in Delhi or in Gurgaon?

They were available on Amazon but the shipping would of course take
more time.

Do let me know pls..

Thanks.
GJ...

P.S. I miss him everyday, it still hasn't sunk in that he's not there
anymore..Can only see me from Heaven..



#97 From: "gauravjain_80" <gauravjain_80@...>
Date: Thu Nov 6, 2008 10:21 am
Subject: Books on ALS
gauravjain_80
Offline Offline
Send Email Send Email
 
Hello all,
Any idea where in India, can we can find books on ALS?

I tried finding Eric is Winning but could not find it with the Book
stores in Delhi or in Gurgaon?

They were available on Amazon but the shipping would of course take
more time.

Do let me know pls..

Thanks.
GJ...

P.S. I miss him everyday, it still hasn't sunk in that he's not there
anymore..Can only see me from Heaven..

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