Entries by Christine Kelly

Announcing Vice President Jenifer Merriam

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Meet the Board of Director’s Vice President, Jenifer Merriam Jenifer Merriam is a mother of two children, Anissa and Ty, affected with Lafora Disease. At her daughter’s diagnosis in 2016, she was told there were no treatments or cures. She left that appointment hopeless and not sure what to do. Jenifer began the isolating journey […]

Lafora Symposium 2023 in review

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The 8th Lafora Disease Science Symposium was held October 9-10th, 2023, in Bologna, Italy. It was the largest event yet, with more than 30 researchers, clinicians, and patient advocates gathered to share their expertise on Lafora Disease. The community joined worldwide to work toward improving treatment for Lafora patients. Thank you to all the attendees […]

Raise Awareness for Lafora Disease on Lafora Body Disease Day 2023

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Share how you #FightLafora on October 1, 2023, our third annual Lafora Body Disease Day, and raise awareness about Lafora Disease! Creating awareness is key to more research, better support, and a brighter future for our kids with Lafora Disease. Keep reading to find out how you can join in. We invite you to create […]

Announcing ICD-10 Codes for Lafora Disease

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We are thrilled to announce that newly designated, unique ICD-10 Diagnostic Codes for Lafora Disease will be effective on October 1, 2023. Lafora progressive myoclonus epilepsy, or Lafora Disease, an ultra-rare neurodegenerative disorder affecting children, has been assigned code G40.C, falling under the G category of diseases representing nervous system disorders.  This development marks a […]