Might be in the wrong Area...

[Countrycouple]

Hey Everyone..
I might be posting this in the wrong area.. But when I had Mom at the rehab at the hospital for her 3 month visit.. Mom brought up some great idea's..

Mom when she was dianosed with this disease.. she instantly thought it would be grat if we had a spokesperson for it here in Canada.. I thought I had one back in my golf tournament.. But for some reason or another he has moved.. So I lost him.. but that was only locally.. I too think we need a name for Canada to promote the awarenes sof this disease.. One reason I think this is very important is to promote it is to raise awareness as I said above..and to help raise money for research , and to maybe help fill our cupboards with more equipment for those who need it rather then buy equipment..

Secondly.. Mom brought upp maybe when people are diagnosed with this disease, that maybe fill out a 20 question survey to help the researchers find out what maybe causes this disease.. I know they used to do this.. But maybe they should start again.. more and more are starting to develope this disease..

What do you guys think of these 2 things?

 

[Al]

Hi Mike. As per usual in our understated ways We do have a national spokesperson. Zack Werner from the Canadian Idol Show is and has been our spokesperson since last year. There is information on him at www.als.ca
I believe they have started using a questionnaire at Sunnybrook to track progress and I did fill out one when I first went there but don't know if it's the same one you are talking about.
AL.

 

[Mike27]

Hi there,

I think the idea of a celebrity as spokeperson is great!
We have Wendy Crewson(actress) and Jean Stilwell(Opera singer), who are fantastic! They come to events, give talks and have made commercials for the national Society.

Perhaps the Provincial societies and local chapters should try to get local celebrities (athletes, news people, aldermen/women etc) to help raise awareness. Check with your local chapter and see if they have an advocacy committee and give them some ideas.

I also like the idea of doing a survey. They may find things (not noted previously) that are common between patients. Perhaps the society (national) could oversee that for continuity and a wider response.

 

[Countrycouple]

Hi Mike. As per usual in our understated ways We do have a national spokesperson. Zack Werner from the Canadian Idol Show is and has been our spokesperson since last year. There is information on him at www.als.ca
I believe they have started using a questionnaire at Sunnybrook to track progress and I did fill out one when I first went there but don't know if it's the same one you are talking about.
AL.

Thank you Al..
I ijust think or wosh (2 different things) that we can be doing more to bring awreness of ALS to the world.. or to Canada.. and to raise money for it more.. Is there away I can get a hold of Zack Werner?

I will check out www.als.ca and see if I can find it..
Thanx Bud..

 

[Countrycouple]

I also like the idea of doing a survey. They may find things (not noted previously) that are common between patients. Perhaps the society (national) could oversee that for continuity and a wider response.

I think we should set up a commity.. and try to work out a 20 question survey.. and maybe we can find something that is common here.. Maybe help the researchers..

 

[Mike27]

I think we should set up a commity.. and try to work out a 20 question survey.. and maybe we can find something that is common here.. Maybe help the researchers..

You mean here on the forum?
Interesting...

 

[Countrycouple]

You mean here on the forum?
Interesting...

Yes, I think here would be the best.. what do ya think?:roll:

 

[ltr]

There might be a couple of problems you would have to work out. Just a couple I can think of would be that you would have to be certain the people filling them out have been diagnosed with ALS and then maybe what info would be useful to the researchers. I can't believe the researchers don't have one for the docs now. From some of the comments I have heard from docs, they have no idea what PALS actually feel. I had a neuro tell me that it wasn't possible to have ALS if he couldn't see twitching in his office! The replies I received from that post proved that statement wrong. And there are so many other things they don't know that PALS experience. Good luck, I think it is a great idea. I haven't been diagnosed, but I will do anything to help PALS, so ask if you need! Leslie

 

[Mike27]

I think it's a good idea, but there are bugs that need to be worked out as Leslie said.

I guess the first thing would be permission from the mods here to go ahead with it.

I'm not familiar with all the legal wranglings of a survey on an open forum (privacy and such) but maybe if the questions were worded in such a way that no personal info (addresses, etc) were given, it may be alright.
But then again, how serious would an anonymous survey be taken by the medical community? I'm not sure on that...

Then we'd have to come up with a draft of the survey questions. Hash out what should stay or go and figure out the relevance.

Then publish it here, and wait for replies. Someone would have to volunteer to collate all the info that comes.

It's an exciting notion and probably precedent setting...I've never heard of a survey done by forum before. Whether it can work or not...who knows?

 

[Countrycouple]

We'll have to work at it..and put some thought into it.. I wonder if some would work as a poll?:roll:

 

[midwestgirl]

The last support group I was at gave us some information on a NIH funded study that focuses on finding the causes of ALS through an examination of both genetics and environmental risk factors. Researchers at the Massachusetts General Hospital are seeking individuals with ALS, their family members for participation in the ALS Gene Study, conducted by Dr. Robert H. Brown, Jr.

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 will be asked for permission to reveiw medical records pertaining to the onset and progression of the disease.

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

I have contact information if anyone if interested.

 

[Countrycouple]

I have contact information if anyone if interested.

Can you please forward it to Mike27 or to myself.. :roll: