As the son of an NBA star and a first round draft pick himself, Larry Nance Jr. has had no shortage of admirers over the years from high school to college at Wyoming to the pros in Los Angeles to Cleveland. There was one fan in particular, however, who connected with Nance Jr. on a different plane.
Noah Weber, who just wrapped up his sophomore year at Scarsdale High School, was diagnosed with Crohn’s disease when he was 11 and within two years he and his family joined forces with fellow Crohn’s sufferer Nance Jr. to be the face of their vision, Athletes vs. Crohn’s and Colitis. Two years ago Weber and Nance Jr., now 26, teamed up to hold a three-on-three basketball tournament at Purchase College to raise money and awareness for Crohn’s and colitis and on June 1 of this month they brought the event and the cause to Scarsdale High School, just one day after a major cocktail party fundraiser.
In total, the weekend brought in close to $100,000.
“I meet plenty of people that are fans of me because of my dunks or because I play basketball or they like the Cavs or whatever it is, but I always take a special interest in the ones that are reaching out because of Crohn’s or colitis and that was Noah,” Nance Jr. said. “He was one of the very first.”
Scarsdale resident Danny Bernstein volunteered his time to run the basketball tournament. He likened what Weber and his parents have done to “turning lemons into lemonade.”
“He took a challenge and not only embraced the cause, but absolutely enriched the community by doing something he loves for a higher cause,” Bernstein said. “It’s a credit to Noah and his entire family.”
Having the event in Weber’s hometown — and having the Nance family as active participants — was a dream come true.
“Purchase is a great, convenient venue, but here you get to do it close to home,” Bernstein said. “I am sure when he spoke to the administration they were absolutely tickled pink to be able to take the facility and share it for a great cause. It’s one of those things that touches everybody in a special way.”
According to the Mayo Clinic website, “Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.”
Nance Jr. and Weber struck up a friendship after Weber’s family contacted him after learning of his history with Crohn’s. The partnership based on their mutual medical condition followed. Nance Jr. was diagnosed when he was 16. Always a good athlete in multiple sports according to his dad — “He was successful in anything he touched,” Dad said — Nance Jr. suddenly stopped growing, became fatigued, lost his appetite and was “always spending hours and hours and hours in the bathroom each day,” Nance Jr. said.
Living near the Cleveland Clinic, the Nance family sought answers. “I took my first dose of a drug called Remicade and it was like a light switch,” Nance Jr. said. “I started growing like a weed and got actually pretty good at basketball. Fortunately that took me out to Wyoming and I haven’t really looked back since.”
Nance Jr. went from short, lethargic bench player to energetic superstar quickly. He grew from 5-11 as a high school freshman to 6-7 as a senior.
“I’m Larry Nance Jr. — I’m supposed to be great from the very beginning,” he said. “It was tough, but once I got diagnosed and got my treatment my energy came around, my love of the game came around and sure enough the skill came around.”
Nance Sr. was always riding his son in those early teenage years.
“I thought he was just a lazy athlete and didn’t want to do much,” he said. “Then we finally got him checked and found out he got Crohn’s and I felt pretty bad for a while, but I got over it quickly because he started doing better so soon after he started taking Remicade. It’s just been fun ever since then.”
Nance Jr. was talking to his mom about not playing sports, but didn’t say anything to Dad. The frustration was mounting for the entire family, though Nance Sr. said he would have supported his son no matter what. He’s glad they found a reason not to throw in the towel athletically.
“We’re just lucky we got him diagnosed and he got squared away,” Nance Sr. said. “After that everything changed. He was really in a bad spot as far as the sports world.”
Watching his son off the court gives Nance Sr. just as much joy as watching him thrive on the court in the city he himself played in. Nance Sr. allowed his Cleveland No. 22 to come out of retirement so his son could wear it.
“To me it’s kind of what life’s all about,” Nance Sr. said. “He’s a basketball player and that doesn’t make you better than anybody else here. He’s a really good one, people look up to him and he’s using that power to help other people. That’s what life’s all about.”
Seeing what his son and Weber have created makes Nance Sr. proud.
“Anytime you do something it should make you feel good about what you’re doing,” he said. “I feel good about what he’s doing, he feels good about what he’s doing and he wants to do more of it.”
It wasn’t until his junior year at Wyoming that Nance Jr. felt comfortable enough to share his story in USA Today. He knew there were other big name athletes out there that had Crohn’s, but he “kinda wanted to be the face of this thing,” he said.
That happened thanks in part to Weber and his parents. When Weber first did an internet search and came upon Nance Jr.’s story, he was still struggling to find answers and help at Mount Sinai Hospital. It was more the emotional support and positive outlook that Nance Jr. was able to provide.
The first time 6-foot-9 Nance Jr. and Weber met at a Brooklyn Nets game a few years ago, Weber’s head was at Nance’s elbow level. Now Weber is up at Nance’s shoulders.
“He’s working his way up,” Nance Jr. said. “Still can’t beat me in anything, but he’s working at it.”
Though they’re both busy in their own ways and live many states away from each other, Weber and Nance Jr. hang out as much as possible when their schedules allow. They talk, play video games and work on their joint venture to help others, which now includes a scholarship fund.
“It speaks to the type of person that he is,” Weber said. “He’s just a normal, down-to-earth, kind person who wants to help others. Obviously he could have just said, ‘OK, let me take a picture with this kid,’ and tell me he hopes I feel better. Instead he started an organization with me. He’s a great person, a great role model, definitely just looking to help others.”
Weber and A vs. C also work to connect other youngsters who have Crohn’s with Nance Jr. and Weber mentors kids in how much hope they can have with new advancements.
“The plan, the hope is to grow this as large as we can possibly get it,” Nance Jr. said. “This is something we’re both extremely passionate about and I’m not the only professional athlete with Crohn’s disease, so I would love to one day get some other people in … There’s a few of us out there and at some point I’d like to get us all under one umbrella and attack this thing as a whole.”
Over the last two years since the first tournament, Weber switched medications and had an ileocecal resection (part of his bowel was removed in January 2018). He no longer has to get infusions, which need to be scheduled in advance and take up a lot of time. Now it’s just a shot of Stelara that gets injected at home every four to six weeks when needed. His life has completely turned back around. He’s got more time and he’s healthier than ever. Plus, he’s shot up several inches and he competed in high school sports with the junior varsity volleyball and baseball teams this school year. He also plays rec basketball.
Weber no longer feels alone and left out as he did as a middle-schooler coming to grips with his challenge.
“If you were to tell me I’d be on the JV baseball team my sophomore year I would have said no way,” Weber said. “I was tiny for my grade, weak, fatigued. Now I’m catching up to everyone else. Hopefully I’ll be just as strong, just as tall, just as fast as all my friends.”
The fundraiser cocktail party and the basketball tournament brought out the best in the community. Scarsdale mom Joey Silberfein was doing her part to help out by working the baked goods table at the tournament. You wouldn’t know it by looking at her, but she was diagnosed with Crohn’s in her late 20s. While Silberfein doesn’t know exactly what Weber and Nance went through as youngsters, developing Crohn’s as an adult presented its own challenges.
Silberfein graduated from law school in 1997 and was diagnosed the next year. She found herself weak, unable to keep food down, feverish and seeing double. “I had just started working at a law firm and I just felt really weak and realized that every time I ate I had to run to the bathroom,” she said. “It felt like it was out of nowhere.”
Lucky to be diagnosed quickly in less than a week, Silberfein got started on her new journey that began with finding the right medication. “I have good days and bad days,” she said. “When I’m not in a flare I’m like anyone else, but I definitely have some bad days where I have really cramping and things like that. When I’m in a flare I have no energy, I can’t absorb nutrients and I get very weak.”
Silberfein has led as normal a life as she can. Post diagnosis she got engaged, married and had three kids. Getting pregnant was a challenge as she had to be healthy in order to conceive to ensure the best possible outcome for mother and child. She typically became ill after having each child and she and her husband Scott often took leaves from work to care for her and their children.
Being on constant alert, avoiding long car rides when the kids were younger and knowing where every bathroom is, is just part of the lifestyle.
“It’s things like that that definitely impact your life, but my doctor made me promise that I would control the disease and the disease wouldn’t control me,” Silberfein said.
She took that advice and she’s glad to see Weber living his life that way, too.
“I think it’s amazing that Noah had the forethought with Larry to put this together for kids,” Silberfein said. “When I was first diagnosed I had never heard of the disease, but I was already in my 20s. I had my friends, I was already dating my now-husband and he was very supportive. For a young kid it can affect your growth. It can affect your ability to go to school. To know there are other people like you is so important. To have somebody like Larry, who is an NBA star that people can look up to and say, ‘Hey, wait a minute, I can lead a normal life.’”
The Silberfein family has been involved in fundraising and research for Crohn’s and colitis for nearly two decades and have been lauded for their efforts by various organizations. At one dinner a woman broke down in tears once she heard from Silberfein that there was in fact hope that she, too, could have children some day.
For Silberfein it’s all about “being willing to talk about a disease that makes you run to the bathroom. It’s not glamorous.”
That’s what she admires about Weber, especially.
“I’m very open about it,” Silberfein said. “I don’t think there’s a benefit of keeping it quiet. That’s what’s so great about what Noah is doing. A lot of kids don’t want to talk about it because it’s an embarrassing disease. But he is and that tells other people that it’s OK. He’s remarkable.”