August 24, 2018: Lafora Body Disease Awareness Day

WHEREAS, lafora body disease affects very few children, yet it is extremely devastating to a family as children are usually healthy children until symptoms manifest in early adolescence; and,

WHEREAS, only 200 children in this world (and only 1 in Ann Arbor) 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 and include difficulty walking and talking, memory problems, and frequency in urination. The disease carries a grim prognosis, with a median survival rate of only 10 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 patients suffering from lafora body disease and their families; 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 2019;

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, Rick Snyder, governor of Michigan, do hereby proclaim August 24, 2018 as Lafora Body Disease Awareness Day in Michigan.