December 16 - 22, 2019: Lafora Body Disease Awareness Week

WHEREAS, Lafora body disease affects very few children, yet it is extremely devastating to families as children do not show any symptoms until early adolescence; and,

 

WHEREAS, only 200 children in this world, one in Ann Arbor, Michigan, are affected by Lafora body disease, as it is one of the rarest and most devastating forms of epilepsy and is terminal at this time; and,

 

WHEREAS, symptoms for Lafora body disease are usually epileptic episodes during late childhood, including difficulty walking and talking, memory problems, and frequency in urination; and,

 

WHEREAS, Lafora body disease carries a grim prognosis, with a median survival rate of only ten years; and,

 

WHEREAS, patients are often misdiagnosed with myoclonic epilepsy instead, as the symptoms are extremely similar for both; and,

 

WHEREAS, due to its scarcity, there are few resources for both the families and patients suffering from Lafora body disease; and,

 

WHEREAS, we look forward to the advances that have yet to be made as well as the first ever clinical trials aimed at curing this disease which will likely take place in 2020; and,

 

WHEREAS, on this day, we join with all who have been touched by this disease to spread awareness and hope for a cure someday;

 

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim December 16-22, 2019, as Lafora Body Disease Awareness Week in Michigan.