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Polling and Messaging Data

Discover what people actually know about ALS, ongoing I AM ALS polls, and how to better talk about and message ALS

As individuals who often find themselves in public talking about ALS, we wanted to share with you the results of polling work that I AM ALS has commissioned. As you will see, for too long we have been talking to ourselves, hiding behind acronyms and scientific terms that block us from those not in the fight. It is it time to embrace a way of talking about ALS that anyone can understand. To make clear that the fight against ALS must be fought by all of us. Together.

Ipsos 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. What this poll discovered is that Americans know little about ALS or our fight:

  1. More than 60% of Americans know nothing about ALS whereas only 32% knew nothing about Alzheimer’s
  2. More than 60% of Americans do not know that ALS is always fatal
  3. 9.5 out of ten Americans cannot name a single ALS non-profit, charity, or foundation working to cure ALS
  4. Less than 50% knew that the Ice Bucket Challenge raised money for ALS

The Ipsos poll also discovered that Americans are far more likely to donate to fight a disease like ALS when they know someone personally affected by the disease. In fact, 53% said knowing a patient would make them most likely to donate money towards a disease.

Quadrant 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 fight against 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 non-profit 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 men and women of every age, 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, Alzheimer’s, and Huntington’s.

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 fight.

As we’ve worked on these messages and campaigns, we found that many of you have already started doing that as well. We’ve included some samples of your videos below.

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.

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