Chelseas Hope Lafora Children Research Fund

Annual Lafora Science Symposium: Our organization hosts an annual science symposium that brings together families, scientists, clinicians, patient advocates, and industry representatives to accelerate the development of therapies for Lafora disease. We hosted 70 in-person and 50 virtual participants for our 3-day event in San Diego.

Funding Lafora Biomarker Screenings and Repurposed Drug Screenings: Contracted the services of labs at the University of Florida and the Instituto de Biomedicina de Valencia to perform screenings for Lafora disease biomarkers and drugs that could be repurposed to treat patients with Lafora disease. We will receive the results from these screens in 2025 and will use the information to support future Lafora research and drug development.

Officer compensation & independent contractors supporting program services

Lafora biomarker workshops

Lafora family support group meetings

Caregiver survey and registry development and maintenance

Program service accounting, promotion, and it expenses

Family grant, funds for medical care assistance