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My son received this Dynavox Maestro in 2012. This item retails for $8000+ He used the device for a few months off and on; his use was very minimal. The item has been safely stored for the past few years. There is nothing wrong with the device, he just needed something different to meet his...

Has anyone done or does anyone know about this clinical trials. Clinical Trial of Ezogabine (Retigabine) in ALS Subjects, It is on the ALSTDI website and has been forwarded to my PALS by a family member.

Your thoughts? "Fringe" group? Legit? This website is not new to me, but I've been looking a little more closely at some of the supplement regimens and other info lately.

Hi, It's been reported that since doing some work on the website a couple weeks ago that people are having issues such as: Making a post and then not seeing it appear on the website right away Refreshing the page makes their post appear Viewing the forum is leaving people feeling that they...

Hello, It has been a long time since I have posted in this forum, and I can't find my old thread so I started a new one. I'm sorry. I have been twitching everywhere for over a year now. Started in legs, now everywhere. I don't have true weakness, but often fatigue very easily. I get headaches...

Hi, my brother was officially diagnosed with ALS on December 29, 2015. It rocked our world. He is 45 years old, a single dad with two young children. He will begin the ALS clinic the first week of April. I personally look forward to that as any direction and guidance is greatly appreciated. This...

I think I may have convinced my husband that a second opinion is valuable. In the meantime, I wrote to the local ALS chapter and asked if they officially endorse the idea of a second opinion or not. I did read the "sticky" regarding the value of a second opinion. I do not want to alienate or...

A research group based in the US (Pinnacle), touched base to ask permission to speak with individuals diagnosed with ALS. They're working on behalf of a Japanese pharmaceutical company and want to conduct a phone interview with individuals diagnosed with ALS, living in the US. They will...

Based on a thread and post that I can't find at the moment, people were suggesting a way to thank people for posts in order to recognize individuals that provide valuable information. The thanks button will recognize valuable posters and helpful individuals. Thanks are tracked and instead of...

A private discussion area is now accessible to administrators, moderators, forum supporters, and individuals that have contributed content (posts) to the website for a long period of time. Please note, 'private' simply means the content in these forums cannot be seen by search engines, be...