How you can help CF research - right now

From the time that we’re little kids, we’re all told that everyone is unique. Our personalities are unique, our faces, our laughs.

When it comes to the healthcare that we get, though, we are usually grouped into big buckets, and that means that we’re not getting the best care possible. We receive one-size-fits all care, even though we know that everyone is different.

The way that a treatment works for you, the way your body changes over time, the challenges that you face – all of these are unique to your life, to your experience.

The best doctors and nurses know this, and they do their best to see patterns, but they don’t have enough information to get specific. Since they only see you once in a while, and they don’t know a lot about what’s going on when you’re not in the clinic, they have to group people into big buckets.

You can imagine that it looks like this:

Your doctor might say that you’re closest to the first dot, and that’s why you got the orange inhaler. But what if they had more information about everyone who takes that orange inhaler?

Then, the picture might look a bit more like this:

Now that the doctors and nurses have more information, they can see that there aren’t 4 buckets of people – there are 12! Suddenly, it’s clear that you shouldn’t get the orange inhaler, because the pink one is probably better for you.

So how do we make this happen?

It’s up to you. Your knowledge matters – a lot – because it’s the only way that we can start to see the patterns. We need to know that you cough less on the orange inhaler, but it makes you shaky. We need to know that when you start taking the pink inhaler, you like it more.

Without this information, we’re going to be stuck in the one-size-fits-all land. But here’s the thing – the only one who knows what works best for you…is you. So we need to know what you think!

When you use Folia, you’re creating usable information out of your experience. This is because every time you answer a multiple-choice question, it creates one new piece of data that never existed before, about how you are responding to treatment.

This is so, so powerful!

The good news is that our early Folia users have already created so much information. Earlier this week, we celebrated a big milestone – these pioneer trackers have answered 100,000 questions about what they’re experiencing! That’s a lot of data, and we can now start to use this information for research. We can’t wait to announce a new research partnership this summer. Stay tuned!

As we grow, the more people who are using Folia to collect their individual experiences, the more specific we can help your doctor to be.

So if you want to help create a future in which everyone gets the right care, the first time, there are two simple things you can do:

1.       Track how your healthcare is working, or not, using Folia

2.       Share with others so we can grow the group of people collecting their experiences, with invite code COMMUNITY19

The future of precision care is up to you, and it’s easier to help than you think. 😊