Cure Sanfilippo Foundation Heralds New Awareness Day in Ohio

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by Mary Chapman |

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For nearly two years, an Ohio couple shared the heartbreaking story of their young son’s diagnosis with Sanfilippo syndrome, seeking to raise awareness about the rare genetic disease they had never heard of until it affected their own child.

Then some friends got involved, one thing led to another, and now, Ohio’s governor has signed into law a bill (HB 32) making Nov. 16 Sanfilippo Awareness Day in the boy’s home state.

“It’s amazing to know that Sanfilippo syndrome is officially recognized by the state in its revised code and [that there’s] a day dedicated to awareness of it,” Glenn O’Neill, president of the Cure Sanfilippo Foundation, said in a press release.

“This bill also is a great reminder of the power in every single action, every effort, to spread awareness,” O’Neill said.

The signing by Gov. Mike DeWine (R) was a culmination of advocacy and awareness efforts, mingled with happenstance.

Jennifer and Brian Kelly’s young son Oliver was diagnosed with Sanfilippo in the fall of 2019. The youngster had been developing just fine until he was about 3 1/2 years old. That’s when the family began noticing cognitive regression. The child who, according to his mother, was very excited about the alphabet, began having trouble with words and letters that he had already mastered.

The months leading to their son’s diagnosis were hard for the Kelly family. It was “agonizing in feeling something was ‘off’ with Oliver and the endless nights of reading how to be a better parent, trying new ‘systems’, and participating in behavioral therapy,” the parents say on a “Meet the Families” page on the foundation’s website.

Following that diagnosis, the family created a Facebook page, Oliver’s Tomorrow, and began working toward greater education and advocacy.

Enter family friends Dave Salisbury and Frank Strigari. After hearing the Kellys’ story, Salisbury and Strigari used their professional connections to raise awareness of the family’s plight and to ultimately get the disease officially recognized in Ohio.

Years earlier, State Sen. Stephanie Kunze (R-Upper Arlington) happened to have learned about Sanfilippo at a constituent’s lemonade fundraiser for the foundation. She was so moved by what she’d learned that she ended up sponsoring the original bill (SB 275) that sought Awareness Day designation.

All that led to the virtual signing ceremony for HB 32, to which SB 275 was added. O’Neill, along with Jennifer and Brian Kelly, witnessed the event.

“Thank you to Dave, Frank, and Sen. Kunze for all the work you did to make this bill a reality,” O’Neill said.

“And to each and every one of you who keep spreading awareness about this terrible disease,” he added. “Every action, every moment makes a difference. And it means the world to all our families.”

Nov. 16 also is World Sanfilippo Awareness Day, set aside annually to bring global attention to the neurodegenerative disorder that affects about one in 70,000 births. Over time, the disease can cause mental deterioration and mobility loss.