We’re excited to announce the Lafora Walk & Roll: A Virtual June 5K. We are hosting this month-long awareness and fundraising event to support families affected by Lafora disease and help advance potential treatments.

This June, we invite Lafora families, caregivers, friends, advocates, and supporters to participate in a virtual awareness fundraiser by walking, rolling, running, swimming, or completing any movement activity totaling at least 5 kilometers or 3.1 miles.

Because it is a virtual event, you can participate from anywhere, at any time during June. We want to make this event accessible, inclusive, and fun for everyone! We'll have prizes and would love to see your pictures to celebrate your achievements throughout June!

Events will be happening around the world. Please share with us if you set up a 5K in your community, and we can help you promote it.

Note: you must be a registered participant to be eligible for prizes.

How to Register

Navigate to the "Join the 5K or Donate" button at the top of your screen if you'd like to register as a participant. There are three types of tickets: U.S. participation + shirt, international participation + shirt, or just signing up to participate. Your ticket donation helps our work to advance potential treatments for Lafora disease.

There is also an option to just donate or to start a fundraiser.

Create or Join a Team

You can set up a team and share a link with your friends and family to join you. It could be fun to get a group to complete your 5K together! Team captains can share a personalized link so others can join them, or simply donate in support of their efforts. Please don't hesitate to reach out to us if you need assistance!

Event T-Shirts

Wearing your shirt is a great way to raise awareness for Lafora disease! If you've registered for a ticket with a shirt, we'll send it to the address you share with us.

Register before May 18th for an event t-shirt sent directly to your home, which we hope will arrive by June. If you register before June 1st, you will still receive a shirt, but it will be later in the month.

Why Walk & Roll?

All proceeds from this fundraiser will support advancing potential treatments for Lafora disease. By participating, you will join the movement to reach a cure.

Lafora is a rare childhood dementia and epilepsy, and many of our children end up using wheelchairs as their mobility challenges progress. "Walk & Roll" acknowledges the different abilities of our community and, we hope, encourages all who want to participate in this virtual 5K to join us. We need as many people as possible to increase awareness, advocate for Lafora treatments, and drive research.

Everyone can make a difference.

Please reach out to us if you have any questions! Again, we would love to see your photos. Let’s do this!

About Us

Learn more about Chelsea's Hope. >

Our History

As the only U.S.-based patient advocacy organization for Lafora disease, Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s Lafora story with her family and friends.

Chelsea was diagnosed with Lafora disease in 2005 at 15 and lost her fight in December 2016 at 26. Chelsea’s Lafora story was not much different than any other child represented on our webpage. She had big dreams and deserved a better life.

Lafora disease is an ultra-rare degenerative neurological condition affecting an estimated 1,500 children worldwide. Symptoms include epilepsy, ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating. There is currently no cure; the disease is always fatal.

Since we became a 501c3 in 2009, we’ve connected the global Lafora patient community, supported families, created awareness, funded research, and maintained hope in memory of our namesake, Chelsea.

Our Mission

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the
development of treatments.

To do so, we raise awareness about Lafora and the children it afflicts. Chelsea’s Hope also provides connection and assistance for families through education, emotional support, and general assistance. We connect the Lafora research network with the patient community.

Lafora Walk & Roll 5K

Shine a light on Lafora disease with our virtual 5K in June 2026

Team Leaderboard

Team Members