North Star ALS

The Science Hub for the ALS Community

04/27/2026

BCI research is moving fast and in the news. This week we are talking BCI, what trials there are, where they are happening, and what to keep in mind if you or someone you love is considering learning more. Find a list of currently recruiting BCI trials for ALS at our link in bio on Instagram or in comments on Facebook.

04/24/2026

💫Collaboration means something specific to us. Here’s what we look for and what we won’t compromise on.

⬇️ Let us know what you think about ALS collaborations! Or tag your favorite ALS org in the comments below.⭐️

04/22/2026

Before a study reaches you, it moves through a process designed to catch errors, challenge assumptions, and push researchers to say only what their data actually support. That process is imperfect. It can be slower than we like, or it may not always happen (we’ll cover that too, soon!) But knowing how it works changes how you read a headline.

Swipe through for a breakdown of the journal publication process in ALS research. Let us know your thoughts. And tag a person that needs to see this!

04/20/2026

A drug only works if it can reach its target in the body and do so at a dose that is both effective and safe. In ALS, that is especially challenging because therapies often need to reach the brain and spinal cord, which are difficult to access. Many promising drugs fail not because the biology that the drug was targeting was wrong, but because delivery, exposure, or safety limits get in the way.

04/16/2026

Swipe or scroll through to see five different types of clinical trial designs, each with a different approach, strengths, and limitations.

Knowing these designs and recognizing their role in ALS research and participation can make things clearer for those considering trial participation or trying to understand ALS research today.

Share this with a friend who could use this info today.

04/14/2026

“It’s not profitable to cure ALS.”

“If only someone famous or doctors or researchers got ALS, they would find a cure.”

We’re talking about this today because we hear it so often.

People in government get ALS. Doctors get ALS. Famous people get ALS. And the several hundred thousand people facing this disease right now around the world all matter equally.

And a cure? It would be a very profitable medical breakthrough. The incentives run towards solving ALS, not away from it.

ALS is hard to cure for so many reasons: because the disease is genuinely complex, because we have to find the right drug targets and get drugs across the blood-brain barrier in just the right amount, because we don’t know a lot about the brain and it is not easy to access it for learning in those living with ALS.

The disease is what we’re up against. Let’s not lose sight of that.

04/13/2026

We are so proud of our dear friends Lori and Brian Andre, recipients of the Hope Through Caring Award at the Hope Through Caring Gala this weekend. 🤍

Lori and Brian have given so much to the ALS community: their time, their hearts, and their leadership, all while facing this disease up close and personally. They show up quietly, consistently, and generously.

We are also so grateful to Lori for sharing her expertise and insights with North Star ALS as a Founding Board Member.

These two are the definition of hope through caring. We love you both. 🌟

04/10/2026

Just a simple quiz to test what you learned this week. Thanks for joining us at North Star ALS to learn about informed consent.

We’re grateful to Kara Dyckman, PhD
for the time and care she put into researching and verifying content on informed consent for the North Star ALS community this week.

04/09/2026

Going to a consent visit? These are the questions to get you started. We put together a guide for both people living with ALS and their caregivers, because the right questions look a little different depending on your role.

We're grateful to Kara Dyckman, PhD for the time and care she put into researching and verifying content on informed consent for the North Star ALS community.

04/08/2026

Informed consent isn’t one-size-fits-all, and that matters.

Whether you’re discussing a feeding tube, entering a clinical trial, or pursuing expanded access, the protections around that conversation can look very different. In some settings they’re detailed and regulated. In others, they vary widely depending on where you live.

This reel breaks down what informed consent looks like across four different settings, and why understanding the difference is part of advocating for yourself or your loved one.

Keep following us for more on informed consent this week.

04/07/2026

Every clinical trial consent form should include the same core information, and knowing what to look for makes a difference. Here is what you can expect to find. And don’t forget that this just the starting point in informed consent. It should be a dialogue from here.

North Star ALS is grateful to Kara Dyckman, PhD for the time and care she put into researching and verifying content on informed consent for the North Star ALS community.

04/06/2026

Informed consent is more than a signature. It’s a conversation, one you have the right to take your time with, ask questions about, and leave or pause at any time. This week North Star ALS is breaking down everything you need to know before you sign. Keep following us for more.

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