ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 10-30-2006, 09:21 AM #1
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Default alsforums---abstract censored?

wondering if anyone knows the "sponsors" of the ALSFORUMS site--i keep attempting to post an abstract on the site for scientific information, to have it disappear very quickly after it is posted. wondering if the article steps on the toes of the sponsors???this is science after all--why would it be censored?...

Northwestern University
Variations in detoxifying genes linked to Lou Gehrig's disease
Genetic variations in three enzymes that detoxify insecticides and
nerve gas agents as well as metabolize cholesterol-lowering statin
drugs may be a risk factor for developing sporadic amyotrophic lateral
sclerosis (ALS, or Lou Gehrig's disease), and possibly responsible for
a reported twofold increased risk of ALS in Gulf War veterans.


These findings, from a study led Teepu Siddique, M.D., and colleagues
at Northwestern University, open the door to investigating
gene-environment interactions as a cause of ALS and other illnesses and
to the development of molecular targets for specific treatments. The
study was published in the August 22 online issue (available now) of
the journal Neurology.


Siddique is Les Turner ALS Foundation/Herbert C. Wenske Professor,
Davee Department of Neurology and Clinical Neurosciences, professor of
cell and molecular biology and director of the Neuromuscular Disorders
Program at Northwestern University Feinberg School of Medicine.


ALS is a complex neurodegenerative disorder of the motor neurons that
results in muscle weakness, difficulty speaking, swallowing and
breathing and eventual total paralysis and death generally within five
years.


In 1993 Siddique and collaborators determined that mutations in a gene
known as SOD1 account for 20 percent of familial, or inherited, ALS (2
percent of all cases of ALS). However, the cause of sporadic ALS is
still unknown.


In earlier research Siddique and other researchers hypothesized that
sporadic ALS is modulated by variations in multiple genes interacting
with each other and environmental exposures.


The genes for human paraoxanases (PON 1, PON 2 and PON 3), which are
located on chromosome 7q21.3, code for the production of detoxifying
enzymes involved in the metabolism of a variety of drugs (especially statin drugs--poster inserted), organophosphate insecticides, such as parathion, diazinon and chlorpyrifos, and nerve gas agents such as sarin.


Previous research described a possible twofold increased risk for
developing ALS in veterans of the Gulf War, indicating a war-related
environmental exposure to organophosphates and sarin in genetically
susceptible individuals as a possible cause. PON gene cluster variants
have previously been associated with other neurodegenerative and
vascular disorders, including Alzheimer's disease, Parkinson's disease,
coronary artery disease and stroke.


Although the Northwestern DNA study samples were not analyzed for
inclusion of Gulf War veterans, Siddique and co-researchers found
significant evidence that gene variations (polymorphisms) on the
chromosome region encompassing PON2-PON3 were strongly associated with
sporadic ALS.


"Thus, single nucleotide polymorphism genotyping in the intergenic
regions of the PON gene cluster, and replication, gene expression,
gene-gene interaction and PON serum/enzymatic studies may help
elucidate the complexity of PON cluster association with ALS," Siddique
said.


Siddique hopes to study DNA samples from Gulf War veterans with
increased incidence of sporadic ALS and has applied for their DNA from
the Veterans Administration collection.


http://www.eurekalert.org/pub_releas...-vid070506.php
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Old 10-30-2006, 10:41 AM #2
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Hi,

ALSForums seems to only be a sharing/helping support type of forum rather than a scientific one. That is why there are several good forums established for that purpose.
If you are looking for daily encouragement and an ear to bend - that is an OK forum.
If you are looking at sharing specific information and especially scientific information you need to do that on other forums like this one.

All types of forums are needed and they each have their individual purposes for existence. I found that out the hard way myself after being kicked off ALSForums for a while.

Joel
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Old 10-31-2006, 01:09 PM #3
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Hi Olsen,
Thanks for posting this article here...I know there was a fairly large discussion going on at ALSTDF forums...about cholestrol lowering drugs being linked to the onset of ALS...
My husband never took them..and always had very low cholestrol levels all his life..
But, he did participate in the Gulf War study...which cited nerve gas and insecticides as possible risk factors for developing the disease..
The theory about genetic predisposition and various environmental triggers has been around for awhile in the so-called sporadic cases.....
But, I think it is quite an advancement if they can start narrowing down on some of the genes that might be defective...hopefully one day...a treatment such as gene therapy...can be done...Lisa

Last edited by lisag; 10-31-2006 at 01:14 PM.
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Old 11-01-2006, 08:32 AM #4
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http://www.patientslikeme.com/patients
"A new system of medical care by patients, for patients."PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

--------------------------------------------------------------------------------
http://www.patientslikeme.com/patients
Who We Are
Our company, founders, and board of directors are driven by our desire to change medical care by giving patients control of their disease. Discover who we are.

Why We're Here
Our personal experiences with life-changing disease are the reason we're so dedicated to our vision and community. Find out why we're here.

Contact Us
Whether you're a patient, doctor, researcher, clinic, or company, we'd love to hear from you and welcome you to contact us.

Your Privacy
When it comes to healthcare, your privacy is extremely important. Our terms of use and privacy policy are designed to put you in charge of your privacy.

Want to know more? Email us
General Inquiries
Drop us a note with any questions or comments.

email: support@patientslikeme.com

postal mail:

PatientsLikeMe Inc.
222 Third Street, Suite 0200
Cambridge, MA 02142
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Old 11-01-2006, 08:38 AM #5
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http://www.magimedia.co.uk/buildforu...2f2b25b2148671
build-uk.net
Building a motor neurone disease network for the UK
This site is for people affected by motor neurone disease (MND), that means people who:

live with MND
care for someone with the condition
have a family member or friend with MND
work in health or social care services
The forum can be used to contact others with a similar interest in MND - to decide what information and services should be provided, to tell people what you want and to share what you know. We have recently added a voting page and a chat room to communicate with others and let your views be known.


Build-UK Chat Forums
Committed to providing a site that is safe for everyone affected by motor neurone disease (MND).

MND related discussion
http://www.magimedia.co.uk/buildforu...2f2b25b2148671

Chatroom
http://client1.sigmachat.com/sc.pl?id=144320


Foreign Language Forums
GREEK: Καλώς ήλθατε στο Ελληνόγλω&#
http://www.magimedia.co.uk/buildforum/viewforum.php?f=7
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Last edited by BobbyB; 11-01-2006 at 09:09 AM.
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Old 11-01-2006, 08:50 AM #6
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Living with ALS http://health.groups.yahoo.com/group/living-with-als/

Description
An avenue for persons living with ALS and their caregivers to communicate with the ALS community immediately, to share information, ideas, support and fellowship.

All posts sent to this list server are moderated by the manager.

Examples of post content that is appropriate for the list server and WILL be posted:
1) Questions about how to deal with emotional, physical, and social challenges of living with als.
2) Answers to these questions
3) Tips from PALS, CALS, and health professionals
4) Informative ALS or related news articles
5) Info about ALS related websites
6) Posts about upcoming ALS awareness events and fundraisers
7) Personal stories and experiences of PALS and CALS
8) Up to date information on research, drug studies, and advocacy efforts
9) Words of encouragement and inspiration for PALS and CALS going through hard times
10) Occasional (not excessive) quotes and stories that might be inspirational to PALS and CALS

Examples of post content that will NOT be posted to the list server:
1) Posts that have nothing to do with ALS related issues
2) Posts that preach a specific religious dogma in an effort to convert readers
3) "Amen" type mail that would be more appropriate sent to the individual you are responding to.
4) Posts that express disagreement with another person's post in a disrespectful manner. If you must express yourself in this manner please do so privately.
5) Jokes (please send those to your friends here privately)

Group Information
Members: 2488
Category: Care Giving
Founded: Apr 23, 1999
Language: English
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Old 11-01-2006, 08:55 AM #7
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http://www.als.net/forum/

ALS TDF Forum Statement of Purpose The purpose of this forum is to exchange information about ALS, scientific advances in ALS, and treatments for ALS.

About ALS TDF
The ALS Therapy Development Foundation is a nonprofit biotechnology company discovering treatments for patients alive today. Our approach combines the power of a nonprofit mission with the best practices of a for-profit biotechnology company: rigorous, open-minded research and proven drug development techniques.

Our Mission.
What We Do
ALS TDF combines the passion and dedication of a nonprofit organization with the entrepreneurial and scientific spirit of a biotechnology company.

Our laboratory, the leading drug discovery program for ALS, bridges a critical research gap.
Our in-house expertise translates research into potential drug candidates by screening drugs in the SOD1 mouse model of ALS.
Our scientific collaborations are designed to bring the most promising leads closer to patient use.
We share emerging knowledge on the disease with patients, physicians, and researchers as quickly and comprehensively as possible.
Every decision is made in the interest of finding effective treatments for people living with ALS.
Our unique approach accelerates drug development for ALS.
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Old 11-01-2006, 09:03 AM #8
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The ALS Advocacy Community
http://als.clinicahealth.com/

Welcome to our Community!
This is your place on the Web to meet friends, ask questions, and share stories -- all within a safe, secure environment. We hope you'll enjoy the time you spend here.

Things to Do
Sign up - it's free!
Join the conversation!
Read popular items!
Write a blog!
Meet new people!
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Old 11-02-2006, 07:00 PM #9
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Default Disappearing post

I removed the post myself because the link he left did not take you where he said it would. People come here join and give no indication who they are, where they are and dump a link that doesn't take you where they say it does. Are they getting paid for each hit on the site? Who knows? I erred on the side of caution by removing his post and just the fact that he is already complaining on another forum without contacting either David or myself makes me wonder if he is a scammer. Until he proves otherwise he is suspect. Sorry if anybody is offended but as a support forum I don't think we need that type here. AL.

/////////////////////////////////////////////////////

The problem I had was with the broken link. I or anyone else here have no problem with a scientific post but if you put it up I would trust your judgement before a first time poster with no information about themselves that will not contact the administrator but choses to bad mouth us on a different forum. I find that suspect. He could just as easily have left a message here. I answered yours in a timely fashion and would have given him or her the same courtesy.

http://www.alsforums.com/forum/showthread.php?t=1534

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Last edited by BobbyB; 11-02-2006 at 07:05 PM.
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Old 11-02-2006, 07:12 PM #10
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Lightbulb

Hi...I was contacted after the thread was posted here and was asked to put the article on another site...as well..where a conversation about cholestrol lowering drugs was going on earlier this week..
I was alerted after I posted ...that the article was posted by someone else earlier...in another thread...( my own mistake )
However, I was not requested to put up the broken link ..but did so anyway...as the whole copyright issue confuses me...
Anyway for what is worth..I don't think this was spasm...but indeed someone attempting to "share" scientific information...Lisa

Last edited by lisag; 11-02-2006 at 07:27 PM.
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