Tag Archive for: lafora research

Chelsea’s Hope Announces Launch of Advisory Board

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As announced during our 15-year celebratory dinner, Chelsea’s Hope is pleased to share the launch of our Advisory Board.

Chelsea’s Hope has a dedicated Board of Directors, staff, and volunteers who work to execute our mission. To accelerate our path to treatment and expand our capacity to serve families with Lafora, the Board nominated 11 champions in the fields of basic science research, clinical care, and regulatory expertise to provide advice and guidance as we work toward the common goal of a cure for Lafora. We are pleased to share that all 11 nominees have agreed to serve as members of the Advisory Board.

Chelsea's Hope Advisory Board standing in front of a screen

The first Chelsea’s Hope Advisory Board meeting was on September 25th, 2024.

Please join us in celebrating our inaugural Advisory Board: Dr. Pascual Sanz (Valencia Institute of Biomedicine, CSIC), Dr. Souad Messahel (Elpida Therapeutics), Dr. Jose Serratosa (Fundacion Jimenez Diaz University Hospital), Dr. Jordi Duran (IQS Barcelona – Universitat Ramon Llull), Dr. Roberto Michelucci (IRCCS Istituto delle Scienze Neurologiche di Bologna), Dr. Francesca Bisulli (University of Bologna), Dr. Matthew Gentry (University of Florida), Dr. Antonio Delgado-Escueta (David Geffen School of Medicine at UCLA), Dr. Viet Nguyen (Chapman University), Dr. Berge Minassian (UT Southwestern Medical Center), and Mr. Jeff Milton (La Jolla Labs).

The Advisory Board will meet twice yearly and offer guidance and support to the Chelsea’s Hope Board of Directors. We appreciate their advice on our programs, fundraising, and events. 

The inaugural Advisory Board meeting was held on September 25th after our 2024 Symposium. We look forward to these experts’ impact as they work more closely with our organization and advance our mission.

Lafora Disease Biomarker Workshop August 19th - 20th Hybrid event hosted by Chelsea’s Hope at UTSW Register Now to Participate

Announcing the Hybrid Lafora Disease Biomarker Workshop

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August 19-20, 2024 at UT Southwestern

Chelsea’s Hope is proud to partner with the UT Southwestern Medical Center (UTSW) in Dallas, Texas, to host a biomarker workshop. Our goal is to provide a platform for community education about the role of biomarkers in accelerating the path to clinical trials for Lafora disease. 

Lafora Disease Biomarker Workshop Biomarker 101 for families Patient sample collections Discussion panels Register Now August 19 - 20 Hybrid at UTSW

For Families

Have you ever wondered why we collect blood serum and CSF samples for our children with Lafora? Do you have questions about why patients undergo regular MRI scans? This workshop is designed to educate about how biomarkers can accelerate the path to therapy approval in clinical trials. Also, we want to learn which biomarkers are the most promising for use in treating Lafora disease. Above all, this knowledge will lead to a brighter future for our children. Please register to attend virtually.

For the Lafora Research Network

Clinicians and researchers, we will be sponsoring several expert discussion panels during the workshop to reach a consensus on protocols for sample collection and critical markers to track. Please register to be a part of the discussion for the topics below: 

  • Metabolic Biomarkers from Serum, CSF, and MRI/FDG-PET scans
  • Epilepsy & EEG Clinical Markers
  • Cognitive Evaluation & Markers
  • Motor Skill Evaluation & Markers


Questions? Please check out our FAQs section on our webpage. 



Register to attend virtually