looking to speak with ALS patients, caregivers

[chantelleb]

Hello forum,

My name is Chantelle and I'm a researcher working on a documentary about global health and the pharmaceutical industry -- we are covering a number of topics in the film, such as access to medication, drug development, rare and neglected disease research, etc.

I am hoping to get in touch with some ALS patients who live in/around Vancouver, BC to learn about their experiences with ALS. I am particularly interested in hearing patient perspectives about the pharmaceutical industry, given the lack of treatments for this disease. Patient perspectives are a critical part of our project, as these are the people who are impacted most by industry and researchers' progress in creating lifesaving drugs and treatments.

If you are interested in getting in touch, send me a message here and I would be happy to send you more details about the project, answer any questions you might have, etc and we can go from there.

Best,

Chantelle

 

[kmendsley]

You won't get many people finding you here on the 'welcome, hello' forum. Copy and paste this just ONE time in the General ALS section and some CALS and PALS might be able to help you out.

 

[chantelleb]

Thanks for the tip -- I've posted in the general discussion section and will see if anyone wants to get in touch. I thought this would be the least invasive way of looking for people but, of course, would like to reach the most amount of people possible.

 

[kmendsley]

No problem...yes it was good to post here first..but not many pals and cals look over here...I don't usually either...kind of a fluke that I even saw it.

Biggest thing to tell you is don't push it though...people with come if they want...we have enough on our minds without thinking about research stuff...but you might find a few who are in a good enough place to help you out