On Jan. 6, 2020, Ohio Governor Mike DeWine signed a bill that designates November 16 as Sanfilippo Awareness Day in the state.
“It’s amazing to know that Sanfilippo Syndrome is officially recognized by the state in its revised code and a day dedicated to awareness of it,” said Glenn O’Neill, President of Cure Sanfilippo Foundation.
“This bill also is a great reminder of the power in every single action, every effort, to spread awareness,” said O’Neill.
The bill happened because Jennifer and Brian Kelly, parents of Oliver, have been bravely sharing their family’s story since Oliver’s diagnosis in fall 2019. Hearing their story inspired family friends Dave Salisbury and Frank Strigari to leverage their professional expertise to get the day officially recognized in Ohio. And State Senator Stephanie Kunze (R-Upper Arlington) agreed to sponsor the original bill (Senate Bill 275), having learned about Sanfilippo Syndrome years before at a local constituent’s lemonade fundraiser for the Foundation and been touched by the cause.
Each of these pieces has come together to make this bill possible and have Nov. 16 recognized as Sanfilippo Awareness Day in Ohio forever.
Watch the Ohio Channel recording of the signing of House Bill 32, the larger bill that Senate Bill 275 was added to.
O’Neill was honored to participate in the virtual bill-signing ceremony via Zoom with Governor DeWine, along with Jennifer and Brian Kelly.
“Thank you to Dave, Frank, and Sen. Kunze for all the work you did to make this bill a reality,” said O’Neill. “And to each and every one of you who keep spreading awareness about this terrible disease. Every action, every moment makes a difference. And it means the world to all of our families.”
Sanfilippo Syndrome is a terminal, neurodegenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die. Simply put, it is like Alzheimer’s in children. It is caused by a single gene defect which leads to lack of a necessary enzyme in the body, resulting in the build-up of toxic storage in every cell, and is especially harmful to the brain. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome. Learn more about Sanfilippo Syndrome, include the signs and symptoms.