Chelsea’s Hope published its 2023 Annual Report. Inside, you’ll find a letter from our President, a breakdown of our 2023 impact, financials, and what’s next. Our progress is all thanks to the support of our community. Our work is all for our children fighting Lafora Disease.

Since our humble beginnings as a blog started by Chelsea Gerber’s family in 2007, Chelsea’s Hope has remained committed to sharing Lafora stories and connecting families. In 2009, we became a 501c(3) organization to raise funds for research, treatment, and, ultimately, a cure for those affected by Lafora Disease. There are now promising treatments in the pipeline, all thanks to the dedication of the Lafora research network. In 2023, we updated our mission statement to reflect the challenges we seek to overcome.

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

2023 Achievements

Despite its challenges, last year included hopeful advancements. Learn more about our events, programs, and milestones in the 2023 Impact section of the Report.

In 2023, we…

• Developed a new mission statement.
• Started the Lafora Disease Research Roundtables.
• Launched our Volunteer program.
• Received a 2023 Patient-Partnered Collaborations for Rare Neurodegenerative Disease grant from the Chan Zuckerberg Initiative.
• Launched a Sibling Support Group program.
• Welcomed a new secretary to the Board of Directors.
• Appointed a new Vice President to the Board of Directors.
• Received a unique ICD-10 Code for Lafora Disease – G40.C – on October 1, 2023. 
• Supported the 8th Annual Lafora Disease Science Symposium.

Much of our work was possible thanks to the capacity-building grants from the Chan Zuckerberg Initiative. We also received support from the Danny Did Foundation, Vibe Bio, the Every Life Foundation, and generous donations from the Weiss family. We appreciate all our 2023 donors! Your contributions will support our work in 2024.