This ALS Awareness Month, a new generation is stepping up—and inviting others to join them.

Last year, on the Endpoints Podcast, we spoke with three young girls—Kaitlin, Clara, and Ellie—who had already experienced the impact of ALS in deeply personal ways. Some had lost family members. Others were watching loved ones face the disease.

But instead of feeling powerless, they decided to do something about it.

That year, Clara and Ellie launched Kids’ Quest to Cure ALS—a growing, youth-led movement built on a simple but powerful idea: Kids and teenagers can play a real role in ending ALS.

Now in its third year, Kids’ Quest to Cure ALS is using ALS Awareness Month this May as a moment to grow—inviting more kids and teens to get involved, take action, and help raise awareness.

What Is Kids’ Quest to Cure ALS?

Kids’ Quest is a grassroots, youth-driven initiative designed to make ALS more visible—and to empower young people to take action in ways that feel meaningful to them.

  • It’s not a one-size-fits-all program.
  • There are no strict rules.
  • No minimum fundraising goals.

Instead, it’s built around creativity and ownership.

Kids can

  • Host a lemonade or iced tea stand
  • Organize a game competition
  • Present at their school
  • Partner with a sports team
  • Or come up with something entirely their own

And participation doesn’t have to be about raising money. Raising awareness—starting conversations, educating others—is just as important.

A Movement Built by Kids, for Kids

What makes Kids’ Quest unique is how it came together.

It started with a simple iced tea stand on Capitol Hill. From there, conversations with advocates and leaders helped spark something bigger—a cross-border collaboration between kids in the U.S. and Canada. 

Through Zoom calls and shared ideas, they built a platform where kids everywhere could get involved.

Today, their vision is growing: They hope to see a map filled with events across North America—and eventually, around the world. Additionally, Team Drea is matching every dollar raised up to $13,000.

How to Get Involved This ALS Awareness Month

Kids’ Quest offers a way for young people to take action against ALS.

If you’re a kid or teen:

  • Choose something you love doing
  • Turn it into an event or activity
  • Share why ALS matters to you
  • Invite others to get involved

Funds raised through Kids’ Quest directly support research at the ALS Therapy Development Institute (ALS TDI), helping scientists move promising ideas forward and bring potential treatments closer to people living with ALS.

If you’re a parent, teacher, or community member:

  • Encourage the young people in your life to participate
  • Help them organize an event
  • Use this as an opportunity to start conversations about ALS

Learn more and get involved at https://fundraise.als.net/kidsquest.


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