Some neighborly goodness in East Meadow

It was the first time I had ever met people with my condition, and I met a ton of people of all ages with psoriatic arthritis including kids who had it better than me and kids who had it worse.”

Shane Weiner

After watching his 21-year-old neighbor Shane Weiner grow up with psoriatic arthritis, Vinny Cafiso of the Independent Order of Odd Fellows thought some good could be done through their most recent fundraiser.

The fundraiser, held at Governor’s Comedy Club on July 31, raised $5,500 which will be sent to the National Psoriasis Foundation. Weiner’s been a big part of the foundation since he was 13.

“I was overjoyed, I was honored,” Weiner said. “He’s been my neighbor for my whole life and he’s known me at all points when I was at my best or my worst.”

As an infant, Weiner was diagnosed with psoriatic arthritis,  a mix of psoriasis and arthritis often found in adults that causes swelling of fingers and toes, stiffness and throbbing joints, and a reduced range of motion. “Nobody knew what was wrong with him,” Amy Weiner, Shane’s mom said. “His fingers blew up like little sausages and he had a hard time moving.”

Amy said that Shane had a tough time in school because he was very different from other children. “His reality,” she said. “Was very different from other kids’s realities.”

Doctors told Amy that Shane was the youngest patient to ever have the disease. Amy said that Shane was the first child to be put on biologic medication, which are injectables that slow or stop damaging inflammation. “They were only indicated for adults over 18, but he was put on it when he was four,” she said. “He was the first one which was great because it not only worked for him, but it really paved the way for other people, other children in his position.”

In conjunction with psoriatic arthritis, in tenth grade, Shane was diagnosed with Crohn’s disease, an autoimmune disease that goes hand-in-hand with psoriatic arthritis. “Through it all, all the social ostracism that you can imagine he went through, he graduated from East Meadow High School and went on to Brown University,” Amy said. “That just tells you his resilience.”

Shane is studying Astrophysics at Brown.

“It was extremely isolating growing up with this,” Shane said. “You can’t expect your classmates at that age to understand or sympathize or any so I was picked on all the time.”

Shane’s resilience is what inspired Cafiso to want to donate the money to NPF. The Independent Order of Odd Fellows, a fraternal organization founded in 1819, focuses on helping those in need. “Seeing Shane grow up and seeing what he went through after not really knowing anything about the disease made me want to do the fundraiser for it,” Cafiso said. “I saw all the pain and suffering he went through and we’re pretty close with the family.”

The fundraiser featured Cafiso’s comedian friend Richie Byrne, and there were about 20 gift baskets for a silent auction. “It turned out really nice and I’m so glad we did it,” Cafiso said. “I know they went through a lot and kids were so mean to him, and he may be quiet but he’s a genius, absolutely brilliant.”

Through it all, Shane has been very active in NPF. He takes part of the annual walk in Manhattan, he’s a regional ambassador, he’s been a youth ambassador since 2013, and has been to many conferences.

“When I was 13, I was first contacted by the regional director of NPF at the time and she invited me to events, and I became more and more involved,” Shane said. “It was the first time I had ever met people with my condition, and I met a ton of people of all ages with psoriatic arthritis including kids who had it better than me and kids who had it worse.”

Shane’s even been a keynote speaker at a few gala’s, speaking of his condition and giving his perspective. He speaks each year at the walk where he leads his team titled Team Lego, which comes from his love of Legos. Shane said that if it wasn’t for Legos, he doesn’t think he would have the dexterity that he has today.

In conjunction with the money from the Odd Fellows, Shane has raised over $6,000 for NPF. “I could have easily quit being involved with the foundation when I went to college but I never wanted to stop,” Shane said. “(The foundation) made me realize that there were thousands, if not millions or billions of people of all ages who go through what I’m going through, and to have a single foundation that works so hard to unite all of these people with different experiences, I just want to keep coming back and try to help them as much as a single voice can.”