Read 2024 Impact in our Annual Report
Chelsea’s Hope recently published its 2024 Annual Report. Inside, you’ll find a letter from our President, a breakdown of our 2024 impact, financials, and what we’re working towards in 2025.
To our generous donors, dedicated research network, and community members, this is your impact, too. Every new resource or hopeful advancement to treatments is thanks to your support!
We often say that together, we fight Lafora disease. That is true more than ever as we are united as a worldwide Lafora community to support the ION283 safety study.
“While we celebrated this milestone, we acknowledge that many families are still without a path to treatment for their loved ones. Every child matters. We will continue to support all of our Lafora families and push for expanded access to treatments and new therapy development.” – Jenifer Merriam, President
Much of the work you’ll read about in the Annual Report was possible thanks to grants from the Chan Zuckerberg Initiative. We also received event support from the Danny Did Foundation, Vibe Bio, Tempo Zero, A.I.L.A., France Lafora, and Association Cel-luz. We appreciate all our 2024 supporters and your continued partnership to reach a cure!
2025 Goals
Last year, despite progress, also left us mourning the passing of more children. We will keep fighting for a better future in their memory.
Our goals for 2025 are to:
- Get the ION283 safety study fully-funded (we are more than halfway there)
- Establish Clinical Centers of Excellence & Guidelines for Clinicians
- Publish collected data in order to:
- Drive biomarker development
- Determine Lafora prevalence rates
Are you interested in getting involved? Stay connected by signing up for our mailing list and following our social media for regular updates. We always welcome donations and volunteers to support our cause.
We remain committed to improving the lives of those affected by Lafora and helping accelerate the development of treatments. Thank you for your belief in our mission!
Chelsea’s Hope c/o Dr. Donohue
