ALS Survey: Awareness, Knowledge, Fundraising

In June 2018 Ipsos undertook a survey of 1,005 American adults on behalf of I AM ALS, a patient-led movement to push for a cure for ALS launched in January 2019. The survey was undertaken pre-launch to assess awareness of and knowledge about the disease (and other related diseases), and to explore public awareness of and engagement with organizations and foundations fighting ALS and a range of other related diseases.

The author(s)

  • Julia Clark Senior Vice President, US, Public Affairs
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The study found that ALS awareness and knowledge is much lower than many similar diseases with comparable incidence and/or mortality rates, and that there is similarly little knowledge about organizations or efforts who are fundraising and fighting this disease.

Just 39% of Americans know that ALS is always fatal. Just over half did not know that the Ice Bucket Challenge (a fundraising campaign that went viral in 2014) was raising money for ALS. And just 5% can name an organization or foundation working to fight ALS.

These are the findings from an Ipsos study conducted June 4 - 5, 2018. For the survey, a sample of 1,005 adults ages 18 and over from the continental U.S., Alaska and Hawaii was interviewed online, in English. The precision of Ipsos online polls is measured using a credibility interval. In this case, the poll has a credibility interval of ±3.5 percentage points for all respondents surveyed.


 

1. How much, if anything, do you know about each of the following diseases? If you have not heard of a disease, just say so.

 

% Know a great deal/Know some

All Respondents

(n=1,005)

Alzheimer's

68%

Dementia / Frontotemporal Dementia (FTD)

50%

Parkinson's

49%

Brain cancer

45%

Multiple Sclerosis

45%

ALS/Lou Gehrig's Disease [SPLIT SAMPLE WITH “ALS”]

40%

Muscular dystrophy

39%

ALS [SPLIT SAMPLE WITH “ALS/Lou Gehrig’s Disease]

34%

Chrongraphisola disorder*

4%

*Made-up disease to assess baseline overstatement on awareness

2. To the best of your knowledge, which of the following was the Ice Bucket Challenge raising money for?

 

All Respondents

(n=1,005)

ALS

49%

Alzheimer's

5%

Multiple Sclerosis

4%

Muscular dystrophy

4%

Brain cancer

2%

Parkinson's

1%

Dementia / Frontotemporal Dementia (FTD)

1%

Chrongraphisola disorder

*

Other

1%

Don't know

33%

 

Additional detailed findings can be found in the PDF download below.


 

About ALS

ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Today, ALS is always fatal and patients typically live for 3 to 5 years after diagnosis. I AM ALS is working to push for a cure. Learn more and support at www.iamals.org.

About the Survey

These are the findings from an Ipsos poll conducted June 4 - 5, 2018. For the survey, a sample of 1,005 adults ages 18 and over from the continental U.S., Alaska and Hawaii was interviewed online, in English. The precision of Ipsos online polls is measured using a credibility interval. In this case, the poll has a credibility interval of ±3.5 percentage points for all respondents surveyed.

For more information on this release, please contact:
Julia Clark
Senior Vice President, US, Ipsos
Public Affairs
julia.clark@ipsos.com

The author(s)

  • Julia Clark Senior Vice President, US, Public Affairs

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