For a rare disease, ALS/MND has generated a disproportionate number of organizations, websites, forums, blogs, and social media content. Many have a short shelf life. Many observers argue that the ALS/MND community is far too fragmented. So why add yet another site devoted to an already crowded ALS/MND playing field?

​

We’re here to fill a gap – namely, a space for deliberation. We hope that that commitment to deliberation will help reduce the fragmentation in the ALS/MND space.

 

The ALS/MND ecosystem is dominated by people and organizations telling us what to think, what to advocate, and what to do. Transparency in decision-making is generally low. High quality, open, public dialogue is scarce. ALS/MND discourse on social media has been unhealthy and at times toxic, and at any rate is designed for soundbites, not for longer-form analysis. With a few exceptions, our formal ALS/MND organizations are generally not welcoming places for those of us who insist on raising difficult questions, challenge received wisdom, or play a devil’s advocate. Raising questions in the patient advocacy world is often viewed as breaking rank. In a war against a fatal disease, breaking rank can be treated as treason. In consequence, a lot of PALS raising legitimate questions and concerns have been made to feel unwelcome.

​

The desire for a united patient voice in the face of a killer disease is completely understandable. But groupthink is rarely a recipe for good policy, and frequently leads very smart people to make bad decisions. We think embracing diverse viewpoints and welcoming thoughtful debates will better serve PALS in the long run.

​

Therefore, we want to be a home for all who wish to hold reasoned discussions on all things ALS/MND. We also want to be a think-tank where hard and even taboo topics are raised – the issues that organizations that can’t afford to lose supporters or donors are afraid to touch. Because we don’t need your money and don’t care who we upset or offend, we’re happy to touch the third rails.

 

We also aspire to be a place where clarity can be provided on the many complex and confusing issues surrounding ALS/MND research, policies, and care.

​

Finally, we want to be a useful historical archive – a source of institutional memory -- for the ALS/MND community. So many people living with ALS/MND have written or posted invaluable observations and ideas over the years, in forums and on social media, but most of it is lost over time. We intend the website to be a place where important discussions in the community live on and are easily accessed years later. This quest for more institutional memory is especially important because of the nature of the disease we have and the rapid turnover of PALS activists.