GHS students plan 5K run to raise awareness about
Huntington’s disease and funds to fight it

GUILDERLAND — Four teens are organizing a road race to help raise awareness about a genetic disease that brought tragedy to a local family.

Stephanie Keller, a Guilderland High School student, said she was touched when she heard the Rodino family’s story. Rachel Rodino was diagnosed with Huntington’s disease when she was 4 years old, and her father, Rick, was diagnosed with the same disease just months later.

Rachel died in April, at the age of 8, and Rick continues his struggle. The community rallied several times to help the family, particularly Rachel’s mother, Lori Rodino, and her two teenage children, Anthony and Gianna.

Keller said she heard Lori Rodino request that people try to raise awareness about Huntington’s disease, as well as collect money to donate to the Huntington’s Disease Society of America, so that others might not have to suffer like Rachel and Rick. The disease is neurological, aggressive, and has no cure.

“Everything they have gone through is horrible, and they want to be able to raise money to help others in the same situation,” Keller said; Gianna Rodino is in Keller’s class at Guilderland High School.

Along with three friends — Alyssa Grogan, Dejana Harris, and Marissa LaFave — Keller decided to organize a 5-kilometer run and walk to benefit the Huntington’s organization.

“We really wanted something that was a community event,” said Keller, adding that this is the first benefit she has ever planned. She and her friends hit the pavement and started telling “everyone we know” about the event, she said. They got immediate help from Bob Oates, a retired Guilderland cross-country coach, and Annette Sebuyira, president of the Guilderland High School Key Club.

The run will take place on Sept. 18 at Tawasentha Park off of Route 146. Keller said about 150 participants had pre-registered, and registration is available on the day of the event. The cost is $20 for adults, $15 for middle- and high-school students, and $10 for children in elementary school.

Registration for the run starts at 8 a.m. in Tawasentha Park; the race will start at 9 a.m.

All money raised will be donated to the Huntington’s Disease Society of America. Donald Higgins, a Huntington’s disease expert who is chief of neurology at Stratton Veteran’s Affairs Hospital, told The Enterprise last December that raising awareness was important, because although there are medications to control symptoms of the disease, there is nothing to slow its progress or cure it.

In addition to registration fees from the race, Keller said funds will come from several local companies that pitched in as sponsors, including Panera Bread, Clancy Real Estate, and Capital Bauer Insurance.

“Gianna wrote me a message on Facebook, thanking me for organizing the run, and Lori wrote us a note of thanks when she registered,” said Keller. Other families from the area also contacted her and told her they had relatives with the disease, and were grateful to see that someone was working on raising awareness.

“Our goal is to raise $4,000 and I think we’re getting close to that,” Keller said.