Entries by Frank Harris

EnAble Therapeutics Expanded Access Announcement

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EnAble Therapeutics has informed Chelsea’s Hope that it is willing to partner with clinicians to lead a n=1 Expanded Access trial or through the Right to Try Act with their potential therapy for Lafora Disease, VAL-1221. EnAble has indicated that the following medical resources and support will be needed: Clinicians with institutional support including internal […]

2021 Lafora Symposium Delayed Due to Continuing Pandemic

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To Chelsea’s Hope Families, Researchers and Clinicians, I regret having to inform you that we must delay the 2021 Lafora Symposium. While international health conditions are improved over last year, the impact of the pandemic continues. The University of California at San Diego, our venue for the symposium, is unable to host outside groups due […]

Chelsea’s Hope Hosts Research Webinar

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Chelsea’s Hope Hosts Research Webinar On June 7, 2021, Chelsea’s Hope was thrilled to be able to host a research webinar on Lafora Disease. We were joined by Matt Gentry of the University of Kentucky College of Medicine and the Lafora Epilepsy Cure Initiative (LECI) and Dustin Armstrong and Rob Shaffer of EnAble Therapeutics joined […]

Researchers Have Discovered the Cause of Neurodegeneration in Lafora Patients

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One of the more horrifying impacts of Lafora Disease is the neurodegeneration that these children suffer. Families bear witness as their children suffer in frustration from their own cognitive decline. Researchers now understand the cause of this degeneration. As Dr. Jordi Duran explains in this article, “For years it was believed that the disease was […]