What is the Slow Progression Project (SPP)? And Why?

This is an initiative to collect as much information and analysis as we can on people living with slow progression ALS/MND.

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About 20% of all people living with ALS/MND survive more than five years after symptom onset, and one in ten live more than a decade with the disease.

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Why this project? Slow progressors have a number of distinct health, financial, care, work, and family issues that merit a separate conversation in the ALS/MND space. This space is meant to

be a platform to explore those issues and host discussions about both the needs of and opportunities for slow progressors.

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This conversation is especially timely because new research in the pipeline on ALS/MND has the potential to deliver therapies that slow or even halt the disease in coming years. The ALS Association’s ambitious vision statement, “to make ALS a livable disease by 2030” reflects this hope that we will soon be at a point where a cocktail of drugs will significantly slow down disease progression.

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If we do in fact make ALS a livable disease sometime soon, that means that slow progressors will no longer be a small subsection of the ALS community – they will become the new normal, and their numbers will swell. This has enormous implications across a wide range of issue areas. Learning lessons from the current cohort of slow progressors is an essential step to prepare for the future. We hope our Slow Progression Project can serve as a valuable tool for planners, as well as for the existing generation of slow progressors.

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Slow progression forums

For short, informative exchanges of advice and lived experiences in the slow progression community, check out the facebook group “ALS Survivors 5+ Years &/or Slow Progression.”