ION283 Safety Study

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 face a pivotal opportunity. Under Dr. Minassian’s leadership, a team at UT Southwestern will start a Safety Study of ION283, a potential treatment, later this year.

The first-ever study is only possible because of your generosity, though. We need to raise $1.5 million to get it off the ground. Your gift will bring hope to life for 10 patients 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? 

This is an exciting step forward! It will ensure a brighter future for the entire Lafora community.

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

Here's where we are in the process: 

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.