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Chelsea's Hope Lafora Children Research Fund's 2023 ANNUAL REPORT READ NOW > a photo of the report cover page is to the right

Reflecting on Progress: Explore Our Impact in the Chelsea’s Hope 2023 Annual Report

Chelsea's Hope Lafora Children Research Fund's 2023 Annual Report cover pageChelsea’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.

2024 Goals

However, 2023, like every year before, also left us mourning the passing of more children. We need to stop this.

Our goals for 2024 are to: 

  • Grow and accelerate science objectives that further clinical treatments.
  • Expand and maintain a strong, collaborative, and actionable research network.
  • Strengthen the Chelsea’s Hope organization by hiring dedicated staff.
  • Be an essential source and repository of information for families, clinicians, and researchers.

What’s next? 

  • We will build consensus for standards of care and biomarkers. 
  • Drug Screening for potential repurposing to treat Lafora Disease. 
  • We are expanding the Lafora Disease Patient Registry and launching a Caregiver Registry. 
  • We are hosting the 2024 Lafora Disease Science Symposium and quarterly Research Roundtables. 
  • 2024 Internship Program to make scientific research more accessible to the patient community.

 

Are you interested in being part of the next chapter of our mission? There are many ways to get involved! One way to stay connected is to sign up for our mailing list, which includes job and board postings and research updates. You can also follow our social media for regular updates. Finally, we always welcome donations and volunteers to support our cause.

We remain committed to reaching a cure for Lafora this year and beyond. Thank you for your partnership!