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2025 Chelsea's Hope Lafora Children Research Fund Annual Report info@chelseashope.org www.chelseashope.org 2025 Annual Report

2025 Annual Report

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Chelsea’s Hope published our 2025 Annual Report! Inside, you’ll find a message from the President of the Board of Directors, Jenifer Merriam, and a summary of our impact in 2025. We also include a financial statement, goals for 2026 and beyond, and acknowledgments.

Thank you to our generous donors, committed research network, and courageous families for supporting Chelsea’s Hope last year. We appreciate your continued partnership to reach a cure!

Download the 2025 Annual Report Right-open Right-open

Stay connected by signing up for our mailing list and following our social media for regular updates. We always welcome volunteers to support our cause and invite you to join Chelsea’s Champions with a monthly gift to support our work in 2026 and beyond.

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Chelsea's Hope Lafora Children Research Fund's 2024 Annual Report

Read 2024 Impact in our Annual Report

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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
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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!

Download the 2024 Annual Report
This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2025 Candid.'

Chelsea’s Hope Earns Platinum Seal of Transparency for 2025

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This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2025 Candid.'Chelsea’s Hope is excited to announce we’ve just earned a Platinum Seal of Transparency from Candid for 2025!

We invite you to check out our nonprofit’s work through our Candid nonprofit profile; where you can view our impact.

We rely on our profile to gather support; it enables funders and donors to find us and learn about our impact. We’ll keep our profile updated so you can see what your donations help us accomplish. Recently, we shared information about our mission, programs, results, financials, and operations.

Chelsea’s Hope wants to ensure you have the progress updates you need to support our mission with trust and confidence. Your contributions make a real difference. You can donate knowing our commitment to operating with the highest level of transparency, as evidenced by our achievement of the Platinum Seal for 2025.

What’s next? 

In 2025, we plan to host three more Research Roundtables and support the Lafora Disease Science Symposium. We must fully fund the safety study to enroll all the eligible patients, too. As always, we will champion the amazing Lafora community and take every step forward to treatments for our children. Finally, you can look forward to monthly family support groups.

Thank you for your belief in our cause!

This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2024 Candid.'

Chelsea’s Hope Earns 2024 Platinum Seal of Transparency

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This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2024 Candid.'Chelsea’s Hope is thrilled to announce we’ve just earned a Platinum Seal of Transparency from Candid for 2024!

We are excited to share the work our nonprofit does through our Candid nonprofit profile, and we invite you to view it and keep up to date with our impact. We shared information about our mission, programs, results, financials, and operations.

Chelsea’s Hope wants to ensure you have the progress updates you need to support our work with trust and confidence. Your contributions make our work to reach a cure for Lafora Disease possible. When you donate, know we continue to operate with the highest level of transparency. Our Platinum Seal is a testament to our commitment to our donors and community.

What’s next? 

In 2024, we plan to host two more Research Roundtables and the Lafora Disease Science Symposium. We will also coordinate discussion and fund a consensus document for biomarkers and treatment of Lafora Disease. As always, we will support the amazing Lafora researchers and industry partners as they do the incredible work of developing treatments for our children.

Thank you for supporting our mission of improving the lives of those affected by Lafora Disease and helping accelerate the development of treatments.