Jenifer Merriam is a mother of two children, Anissa and Ty, affected by 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. She began to research more about Lafora Disease and soon found Chelsea’s Hope Lafora Children’s Research Fund. Shortly after that, she attended her first symposium and began connecting with families, researchers, and doctors within the organization.
Jenifer got involved with Chelsea’s Hope to advocate for her children, find treatment options, and make an impact for all living with Lafora Disease. She joined the board in 2018 as a liaison to the Rare Epilepsy Network and the Epilepsy Leadership Council. She also served as the research director and spearheaded the process of obtaining an ICD-10 code specific to Lafora Disease. G40.C became official on October 1, 2023.
As Vice President, she looks forward to using her leadership experience and skill set to help advance the mission of the organization with a goal to make the impossible-POSSIBLE!