Yorktown Teen with Rare Disease to Throw First Ball at Renegades Game Sunday

Lisa Hodes is 14. The Yorktown resident has a rare disease called Alternating Hemiplegia of Childhood (AHC for short).

“We’re on a campaign to raise awareness which we hope will help us in our efforts to fund research,” said Lisa’s dad, Paul Hodes.

It’s not that doctors don’t know what causes AHC. They do. It’s that there are only about 850 children in the world who have it.

That makes it tough to find funding for research into treating or curing Lisa’s disease, her father said. In fact, a key cause of the genetic disorder, which causes sporadic paralysis of the limbs and a range of other developmental challenges, was only found in 2010 after determined parents and friends pushed the AHC Foundation into a winning spot in a competition for grant money from the The Pepsi Refresh Project.

There’s a fundraising event coming up this weekend: AHC Awareness night at the Hudson Valley Renegades on Aug. 10 at Dutchess Stadium. Lisa will be throwing out the first pitch—game time 5:05PM. Tickets can be purchased by calling 845-838-0094, Password LisaMarie.

Further down the road, there’s a dinner/dance at Ceola Manor in Jefferson Valley on Nov. 7.

Learn more on the foundation’s website and its Facebook page.