Polling and Messaging Data

Three years ago, before I AM ALS was founded — we got out in the market to understand what the public understanding of ALS was. Here are the results of that report in 2018. We went back and did the same survey to understand where we are now and how to best move forward. We want to share with you the results of polling work that I AM ALS has commissioned. For too long we have been talking to ourselves, hiding behind acronyms and scientific terms that block us from those not in the movement. It is time to embrace a way of talking about ALS that anyone and everyone can understand. To make clear the revolution to end ALS must be supported by all of us. Together.

2021 Quadrant ALS Awareness Research

In 2021, research company Quadrant conducted a poll of 1,000 Americans to find out what they know about ALS and a handful of other serious or fatal illnesses. We compared the results to a similar 2018 poll to see whether the awareness of ALS was growing over time in the U.S. What this poll discovered is ALS awareness is in fact growing but we’ve still got work to do grow the mainstream awareness and the movement:

  1. The Majority of Americans still don’t know what ALS is. Of those who do know what ALS is, they understand there are no cures. 
  2. More Americans know someone living with ALS. 
  3. The two most effective ways at motivating people to take action in the ALS movement is through personal connections and stories. Keep sharing yours, advocates! They are making a difference.
  4. People are becoming more and more committed to helping fund the movement against ALS.
  5. Americans have more trust in the development of research for life-threatening diseases after seeing the effectiveness of the medical response to the COVID-19 pandemic and are more willing to invest in it.
  6. Awareness of the Ice Bucket Challenge and its affiliation to ALS is decreasing.
  7. 9.5 out of ten Americans cannot name a single ALS nonprofit, charity or foundation working to cure ALS.

Quadrant research

2018 Ipsos ALS Awareness Research

In 2018, research company Ipsos conducted a poll of 1,000 Americans to find out what they know about ALS and a handful of other serious or terminal illnesses.

Ipsos topline study

2018 Quadrant Movement Building Research

Around the same time, Quadrant Strategies conducted a poll of 500 Americans to see how to reimagine the way in which we message the movement putting an end to ALS. In that poll they tested eight different potential messages. Quadrant then ranked those messages from one to eight. This ranking was based upon the poll respondents:

  1. Assessment of how believable each message was;
  2. Increase in willingness to donate to an ALS non-profit; and
  3. Increase in hopefulness about finding a cure for ALS within a few years.

Three messages stood out as being believable and as producing a more than two times increase in willingness to donate to an ALS nonprofit and in hopefulness about finding a cure for ALS within a few years:

  1. Doctors, researchers and scientists are closer to finding a cure for ALS than ever before, using better science than we would have thought possible just ten years ago. These experts believe a breakthrough is on the horizon but they can’t get there without the necessary funding. Join the movement to stop ALS and bring a new set of treatments within reach.
  2. ALS can strike anyone at any time. Over 90% of ALS patients have no family history with the disease. Your support is needed to stop this disease that affects every age, gender, race and ethnicity.
  3. An estimated 1 in 15 adults alive today – 135 million people – will be diagnosed with a neurological disease. By producing a cure for ALS, we’ll help eliminate dozens of other diseases such as Parkinson’s disease, Alzheimer’s disease, multiple sclerosis, Huntington’s disease and many more.

This data makes clear we have a real opportunity to introduce ALS to the world. To seize that opportunity,  we have set about reimagining how to talk about ALS. Our goal: to craft messages and campaigns that actually engage the entire world in our movement.

Driving this message to the broader world beyond the ALS community is next up on our list. Soon we will be coming to you across all media to ensure that everyone understands that if ALS can affect anyone, defeating it takes everyone. Everyone.

Quadrant messaging research

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