Learning from Those Who Know—Latest ALS Focus Survey Needs to Hear from Current or Past Caregivers

Making assumptions can lead to trouble, but we all do it from time to time. You might assume that since the weather was nice yesterday it will be so again today, but if you don’t bother to find the weather forecast you may end up with some soggy clothes at the least. Annoying to be sure, but not really that big of a deal.

However, assumptions about the impact of a disease as serious as ALS can have far reaching implications. ALS researchers around the world work hard to challenge assumptions and find the facts behind the causes of ALS and how to best treat—and someday cure—the disease. But even in assessing the impact of ALS on day-to-day living, there is the danger of assuming.

The goal of the ALS Focus survey project is to move beyond those assumptions. It is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.

The latest Focus survey has just been deployed, and aims to discover more about the everyday challenges of being a caregiver of a loved one with ALS. If you are a current or former caregiver to a person with ALS, we want to hear from you. You can find out more and sign up at: https://www.als.org/als-focus. From registering to completing the survey, the whole process likely won’t take you more than 20 minutes, and you insights will be invaluable to the ALS community.

The results of the first ALS Focus survey on understanding insurance needs and financial burdens of ALS have been published are available for all to view. Results from the second ALS Focus survey on what matters most to people with ALS are being analyzed and will be available soon.

No doubt we’ll all continue to fall into the assumption trap from time to time. It is human nature. But as the ALS Focus project continues we hopefully will glean some important, useful information about the people and families living with ALS and how we can better address their needs and challenges. ALS does not stop, and neither do we.

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