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Pub raises awareness about rare disorder

Joe McIntyre/staff photographer

Event organizer Pam a Cullip of Cortland participates in a genetic disabilities fundraiser by paying to play a minute-to-win-it plastic cup challenge Saturday while at Malarky’s Pub in McGraw.

One might consider an area pub as the last place one would expect to see education about a rare genetic condition taking place, but that is exactly what happened when Pam Cullip used her parents’ bar to hold an awareness charity Saturday afternoon.

Four years ago, Cullip’s daughter, Brielle, was born with a rare genetic disorder known as hemihypotrophy, or “hemi” for short. The condition causes asymmetry between the two sides of the body.

Hemi affects people differently. Symptoms can be as subtle as a finger or a toe being larger than the others, to the entire side of the body — including bones and organs — being smaller or larger than normal. Hemihypotrophy is smaller bones and organs, while hemihypertrophy is larger bones and organs.

There is also an increased risk of cancer.

Cullip said Brielle is now a happy and healthy as any other 4-year-old girl, but there is a lot more that needs to be done to educate the public about hemi. So on Saturday, Cullip said she picked her parents’ bar, Malarkey’s Pub & Grub in downtown McGraw as the site for a fundraiser and educational opportunity, adding while donations were welcome, the main point of the event was to spread awareness.

Money raised through the event would be put toward supporting families anywhere in the country who need the help, Cullip said.

Cullip said four years ago, while doing some research, visiting with doctors and meeting with other parents of children diagnosed with hemi, she was inspired to do more to educate people about the condition.

“The moms that I had on the support group and the children diagnosed with hemihypotrophy were amazing,” she said. “Some mom had said in the midst of things, ‘I wish there was more awareness.’”

That experience led Cullip, her mother, Sheila Tarbell, and her longtime friend Jaime Rumsey to start Lift Up Hemi Inc., a nonprofit organization that teaches people about hemi and offers them support.

On Saturday, this was done in the form of an in-house poker run. Traditionally, a poker run is a type of fundraiser where participants go from bar to bar to obtain “cards” they need to complete poker hands. Once the circuit is completed, the person with the highest hand wins.

For the Lift Up Hemi event, the rules work the same way except all of the games and activities, like dart-throwing and cup-stacking, were all in one place.

Jaime Rumsey was also helping with the event, but she did not come alone. She brought a few members from the area charity group she helped to start, Rebels With a Cause, to help run the activity stations.

Rumsey said while she is still involved in Lift Up Hemi, there were other causes she and other residents cared about and wanted to support, so she founded the Rebels last year to get like-minded people together to assist any group or cause, wherever they can.

“We volunteer our time … to local organizations,” she said. “It’s kind of a nice little fun way to do more.”

In addition to Rebels With a Cause helping with the poker run, there were even more residents looking to promote hemi awareness. Local country band Small Town Shade had started playing and were already bringing people into the bar early in the event.

Nick Stark, lead vocalist and guitar player for the band, said he was hoping his band’s signature style, which he described as, “country without the twang,” would pack the bars with even more people throughout the evening.

He added that as a Cortland resident, it was also just as important to him that he do what he could to support a friend and his bandmates were eager to help once they found out about where they were playing and why.

“I’ve known Pam and her family for a few years,” he said. “Her daughter’s a sweetheart. One of our members has a lot of family out here in McGraw … so there was no issues.”

Rumsey said this morning Lift Up Hemi raised about $400 with the event, but Cullip said Saturday while anything raised by the poker run would be appreciated, the goal of the event was to help make people more aware of hemi.

“Even if there’s one person today that I’ve educated about what hemi is …, that’s what it’s about,” she said.