Old 03-20-2007, 04:33 PM #1 (permalink)
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Default ALS Survey?

To All:

I was in a local ALS support group meeting and we were brainstorming things to do to cure ALS. This was a offshoot of a discussion we had on the MDA Gift of Time event held here in Denver. Which BTW, was a quite a success. 650 people attending the fundraiser for Augie's quest. But I digress...

One thing we discussed was the need for an ‘ALS Survey.’

The survey’s purpose would be to identify common traits, behaviors, medications (etc.) of ALS patients who live a long time. The idea would be to see if there is a common characteristic (correlation) between patient behaviors and living a long time with ALS.

Has anyone ever heard of such a thing being done?

Jim West

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Old 03-20-2007, 04:38 PM #2 (permalink)
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Hi Jim. One of the members here asked the same question last week. As far as I know no such survey has ever been done. There is another website that does have a survey that you can fill in your own information but as far as I know it is not being monitored by anyone other than the members.
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Old 03-21-2007, 07:18 AM #3 (permalink)
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ALS researchers NEED our help to help fight this horrible disease - but we have to be willing to add a l ittle action to our words. I posted this info on another thread and was a little disappointed at the response I received. It is so important for each, and every one of us, to do whatever we can - even if it might mean a blood draw (not fun, but not nearly as painful as ALS) and taking a little time to fill out a questionnaire.

Here is the information on a Gene Study currently being done.

Researchers at the Massachusetts General Hospital are seeking individuals with ALS, spouses, and friends for participation in this ALS Gene Study, conducted by Dr. Robert H. Brown, Jr. This NIH-funded study focuses on finding the causes of ALS through an examination of BOTH genetics and environmental risk factors.

The purpose of this study is to identify "susceptibility genes" which are genes that may be associated with a higher risk of developing this disease. Also, the researchers wish to recognize possible environmental risk factors that may be involved in causing ALS.

Blood samples from individuals with ALS, some of their family members, and unrelated controls, such as spouses and friends, are currently being accepted for this research project. Participants will be asked to complete questionnaires about their environment and family history. In addition, patients wil be asked for permission to review medical records pertaining to the onset and progression of ALS.

The Massachusetts General Hospital will cover all costs for participation, and the researchers will be happy to make arrangements for the blood samples to be drawn locally. Travel to Boston is NOT necessary to participate in this study.

The research team believes that understanding the causes of ALS will lead to more effective screening, diagnosis, treatments, and a CURE! Isn't that what our support group/ forum wants?! Let's do our part!

To help fight ALS, and find a cure, please contact:

Nicole Couture, BS
Diane McKenna-Yasek, RN, BSN
Day Neuromuscular Laboratory
Massachusetts General Hospital
114 16th Street, Room 3125
Charlestown, MA 02129

PH: 617-726-5750

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Old 03-21-2007, 08:36 AM #4 (permalink)
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I actually called and e-mailed these people. They never responded.

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Old 03-22-2007, 11:34 AM #5 (permalink)
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Default ALS Survey site solved...

I was able to track down something like what I was looking for.

This site allows ALS patients to track AlS pertinent information over time.


For example, enter your FVC and FRS scores, enter what medicines treatments you have sought, and enter your symptoms. Then, compare what you are doing to other ALS patients.

I think the best feature is the ability to review what long lived ALS patients are doing.

Jim

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Old 03-26-2007, 04:54 PM #6 (permalink)
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Link removed...

The problem with sites such as the one described is that they're usually created in order to get the following:

- your name and address
- your email address
- a list of prescriptions that you use

Then, with this information, you'll be inundated with spam email and information about where you can purchase these medications (usually illegal "knock-offs").

In addition to the obvious customer database and advertisements, the forums and user groups will be filled with individuals that pretend to be affected with similar diseases, when in fact, they're website owners and sole proprietors looking to lie, cheat and steal your hard earned money by selling/promoting you garbage that they SWEAR UP AND DOWN will help you fight/beat ALS (or any other relevant illness/disease).

It's almost impossible to prove, almost impossible to prosecute, and extremely sad and detrimental, both financially and emotionally.. I suggest you avoid such sites.

Sites such as the one we're discussing are created to make the owners lots of money, not designed to be helpful, or for any research related benefit.

It's for money, and we don't promote the use of such sites.

Cheers,

David
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Old 03-26-2007, 08:02 PM #7 (permalink)
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The Doctor i see in Philly have been taking both mine and my husband blood for that study so I am already in it also I alway ask to be in studies next week I will be drinking ensure after fasting all night and than a nurse will come to my house and do a breath test to see if als patients have something wrong in the digestive track I am in a bypap study as well I thinkanything I coyld do I will Do to get some answers Pat
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Old 04-03-2007, 01:18 PM #8 (permalink)
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Default ALS Site REPOSTED

I don't agree with David's posting. There may be sites out there that do that and it appears David has been victimized by them.

I have not received any spam or other 'offers' that David rants about. The only thing I advise you to do is turn off the auto-emails when someone sends you a private message. I didn't receive SPAM, but must have received 20 thank you emails for posting my data. The emails were from other PALS.

This site was founded by Stephen Heywood, a PALS who is already dead from the disease. Before I posted anything to the site, I posted some questions to the site. The person who responded, Benjamin Heywood, the guy's brother. I think the site is legitimate.



Jim

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Old 04-03-2007, 04:09 PM #9 (permalink)
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I don’t agree with David’s posting either regarding this particular site. I suggest that David take the time to check this site out before lumping it together with other sites that are truly out to get you.
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Old 04-03-2007, 07:25 PM #10 (permalink)
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Well gentlemen you are entitled to your opinions When I joined that site I was bombarded with spam and it was the only new site I had joined. They may be a legitimate site but there are a couple of things that are suspect about it. Benjamin Heywood is probably an honest man but does he really run the site anymore? Anyone can say they are him in an email. If someone really wants to find it, that information is available elsewhere. Not here.
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Old 04-05-2007, 12:06 PM #11 (permalink)
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Default Are you kidding me?

What is the point of the having the forum if people are editing my posts?

I think the point has been made. Even the densest person will now know that there is a debate on the issue. Why are you still removing the link?

I don't think that I am abusing the system. I'm not posting other 'unacceptable' things.

I think GrampAL and David are abusing their authority. I intend to complain.

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Old 04-05-2007, 01:34 PM #12 (permalink)
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Default ALS Site Reposted for third time

Having messaged David and been told to complain if I have problem with him

then

Having emailed (info@alsforums.com) and was told to leave if I didn't like the policies and then they implied I advertised for the website.

Apparently even this tiny corner of the universe is not immune to vigilante behavior.

I will take the high road. If anyone wants to know the forbidden information, please send me a private message.

jim

+++++info email +++++

Dear Jim,
We value your input, but must remain vigilant.

If you’re unhappy with the forums, moderators, or community we suggest that you discontinue use, and no longer visit www.alsforums.com.

The links and forums you have posted links to are not eligible to be posted on our website.

We do not support the websites or forums you have advertised on our website.

Sincerely,


ALS/MND Support Groups - www.alsforums.com
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Old 03-16-2010, 04:35 PM #13 (permalink)
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Default Re: ALS Survey?

Jim
It is interesting that so little is known about ALS. I thought there would be lots of online surveys. I would be very happy to offer my technical assistance. If you can pull together the survey info I would be happy to register a URL and put it online with the running results. But I will want to include a few basic questions about pets.

Rob


Quote:
Originally Posted by westjlittle View Post
To All:

I was in a local ALS support group meeting and we were brainstorming things to do to cure ALS. This was a offshoot of a discussion we had on the MDA Gift of Time event held here in Denver. Which BTW, was a quite a success. 650 people attending the fundraiser for Augie's quest. But I digress...

One thing we discussed was the need for an ‘ALS Survey.’

The survey’s purpose would be to identify common traits, behaviors, medications (etc.) of ALS patients who live a long time. The idea would be to see if there is a common characteristic (correlation) between patient behaviors and living a long time with ALS.

Has anyone ever heard of such a thing being done?

Jim West

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Old 03-16-2010, 05:11 PM #14 (permalink)
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Default Re: ALS Survey?

Very little is known about ALS, Tadeudz. The database is not a new concept, and I understand that to do it properly, it isnt an easy one either. It requires the input and control from those in the medical field and it may include questions that we have yet considered to ask. The ALS Society has been talking about one, both in the US and in Canada... I actually started a small viral petition hopes of moving it along as it isnt that it isnt happening, it just isnt happening soon enough. That said, if you read the timeline on the website below, it projects the complete web portal development and begin registration of web portal development (pending OMB approval) by December 2010.

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Old 03-17-2010, 07:26 AM #15 (permalink)
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Default Re: ALS Survey?

For the US citizens here... I just received the following in a mass email from ALS Assn Washington DC office:

Quote:
Please Contact Congress Today:
Only 48 Hours Remain to Sign Dear Colleague Letter


Thursday, March 18, is the last day your Representative can sign onto the ALS Registry Dear Colleague letter , which requests Congress to continue funding for this vital research program. Please contact your Representative today and ask him/her to sign onto the ALS Registry Dear Colleague letter. You can contact your Representative from our website here: Public Policy - The ALS Association.

The National ALS Registry is a critical tool in the fight to find what causes ALS and how it can be treated and ultimately cured. And while Congress has funded the Registry in the past, our success this year will depend in large part on the number of Representatives who sign the ALS Registry Dear Colleague.

So please, contact your Representative TODAY and urge him/her to sign the Engel-Terry Dear Colleague letter. Let Congress know that people with ALS, who have no effective treatment option available, can't afford to wait.

Thank you!
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