Give to support the first-ever Safety Study for Lafora disease. Change the lives of 10 patients. Change the future!

After years of frustration, we are overjoyed for this opportunity. A team at UT Southwestern started a Safety Study of ION283, a potential treatment, in December 2024.

The first-ever study is only possible because of your generosity, though. We need to raise $1.5 million to fully fund the study. Your gift will bring hope to life for them and their loved ones.

Please give if you can and spread the word—time is of the essence, and everyone can make a difference. Can you keep hope alive?

Send us any questions that aren't answered on clinicaltrials.gov or our FAQs page.

About Chelsea's Hope

Chelsea's Hope Lafora Children Research Fund fights Lafora disease, a rare, fatal, neurodegenerative disorder that affects children. Simply put, we want to save our kids! Our mission is to improve the lives of those affected by Lafora and help accelerate the development of treatments.

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.

Linda Gerber and Chelsea Gerber smiling at each other

ION283 Safety Study