Kids’ Quest to Cure ALS

This month, we’re excited to introduce the SimpliHere community to two incredible kids — Clara and Ellie Wetzel — who have made it their mission to cure ALS. Clara and Ellie agreed to tell us the story about how and why they founded and have participated, for years, in Kids’ Quest to Cure ALS, a kid-led fundraising effort that benefits the nonprofit ALS Therapy Development Institute, the world’s largest drug discovery lab focused solely on ending ALS.

Clara, Ellie, and kids from across the United States and Canada unite through Kids’ Quest to host events, like game competitions, iced tea stands, efforts to educate others, or other creative offerings in their local communities and online that help to end ALS. Their goal? To show the world that ALS must be cured, and that ALS is not an incurable disease, it’s just underfunded.

Nice to meet you, girls! Can you tell us a bit about yourselves? 

Clara: My name is Clara Wetzel, and I’m 13 years old and in the 8^th grade.

Ellie: My name is Ellie Wetzel, and I’m 11 years old and in the 6^th grade. We are both competitive sailors and we love to travel.

Clara: In addition, I enjoy playing field hockey, cello, and hanging out with friends.

Ellie: I like swimming, playing outside, and spending time with family.

What inspired you to get involved with Kids’ Quest to Cure ALS? 

Ellie: We never got to meet our grandpa, Brian Emerick, or our great grandpa, because of ALS. We wanted to do something to honor them. We also wanted to stop ALS from taking away other grandparents and parents from kids.

How did you get started? How does Kids’ Quest work? 

Clara: We wanted to inspire more kids and teenagers to help fund ALS across the U.S. and Canada. At the ages of 6 and 4, we created an idea to help raise awareness and funds for ALS. We wanted to carry on with the idea of “ice,” from the Ice Bucket Challenge, and we came up with the idea of hosting iced tea stands to raise money for ALS research.

Ellie: We also created a steering committee with kids that had either lost a loved one or had a family member with ALS. This group (Jayson, Colin, Micah, Maleah, Hayden, Kaitlyn, Kyle, Naiad, Clara, and me) created Kids’ Quest to Cure ALS. They all came up with ideas to raise awareness and funds for ALS research. Each member then encouraged their friends to sign up for Kids’ Quest.

Clara: So far, we have held more than 35 iced tea and lemonade stands from Main Street in our New Jersey hometown, to one in Washington D.C., to one on Parliament Hill in Canada. We have raised over $80,000 for ALS charities, including ALS Therapy Development Institute, which we now focus our fundraising on.

What is Kids’ Quest to Cure ALS?

Ellie: Kids’ Quest to Cure ALS unites youth from the United States and Canada to host events that help end ALS. You can create whatever event you think will do the best job of raising awareness or funds for ALS research. You might hold a game competition, host a lemonade stand, have an art or bake sale, or use your talents and imagination to create your own unique idea that shows ALS is not an incurable disease — it is just underfunded. When you sign up, we will fill our map with your star — until the whole map is shining with ALS events!

What has your experience participating been like, and did you encounter any bumps along the way?

Clara: Being a part of Kids’ Quest has been a very meaningful and fun experience for Ellie and me. As we saw it spread across two countries, and inspired kids to take action, we found it very rewarding.

Ellie: Something that we can improve and build on is our publicity. We’d like to help as many people hear about Kids’ Quest as possible — so we appreciate this blog!

Can you tell us more about the incredible results you’ve achieved so far? 

Clara: The first year of Kids’ Quest to Cure ALS was 2024, and we raised just over $10,000. This year we again raised $10,000, plus a match from the Team Drea Foundation, to raise a total of $20,000. In total, Kids’ Quest has raised more than $30,000 in two years. We also had kids from 13 U.S. states and two Canadian provinces participate.

Ellie: Kids’ Quest to Cure ALS will continue raising funds and awareness until there is a cure for ALS!

Wow, that is incredible — you are just young people, and that is a lot of fundraising success! I’m guessing this has been a rewarding experience. Are there any highlights you want to share?

Clara: After we held our first iced tea stand, when I was 6, I said to my mom, “Mommy, this is better than going to Disney World, because we are helping people.” Some of the highlights of Kids’ Quest have been expanding to Canada, visiting and talking to politicians, and meeting John Hopkins, a member of the Zac Brown Band, who is living with ALS.

What would you say to other kids to encourage them to get involved? 

Ellie: No matter what age you are, you can make a difference. That’s why we created Kids’ Quest — to show kids the power within themselves.

A huge thanks to Clara, Ellie, and their mom, Rebecca, for sharing their story with the SimpliHere community this month, and for their incredible work to fund ALS research and cures! To learn more about Kids’ Quest to Cure ALS, sign up to participate, or to make a gift to support Clara and Ellie in their fundraising efforts, please visit www.als.net/kidsquest.

About SimpliHere

The mission of SimpliHere is to ensure efficient care and peace of mind for caregivers and their patients with neurological conditions that impact communication and mobility. Joanna Rosenberg founded SimpliHere to address communication gaps between caregivers and patients. Her personal experience when her mother lived with ALS exposed the challenges of communicating and understanding basic needs, as well as managing daily tasks. Download SimpliHere today!