Health & Wellness

'Humans of New York' project raises $3.8 million to fight pediatric cancer in just 3 weeks

Grace West was diagnosed two years ago with stage 4, high-risk neuroblastoma. But she is one of the lucky ones.

After going to numerous treatments and hospitals, the 12-year-old began an experimental antibody treatment that “felt like you were getting a root canal on your entire body.” It saved her life.

Grace’s story is one of a series of social media posts, photographs and interviews featured by Humans of New York to illustrate the physically and emotionally crushing experiences of pediatric patients at the Memorial Sloan Kettering Cancer Center.

The project has raised more than $3.8 million from over 103,200 people through a crowdsourcing site established less than three weeks ago.

“It’s hard for people to do stories on that because no one wants to hear about a kid being hurt and going through a life-threatening disease,” said Grace.

“I though it would be cool because there isn’t a lot of federal funding that goes in for pediatric cancer. The amount is almost non-existent,” she told TODAY. “And building up awareness will help make a change in the pediatric cancer community.”

About two-third of the money raised will go toward funding research initiatives, while the remainder will be applied to family support programs, said Nina Pickett, Memorial Sloan Kettering's Department of Pediatrics administrator.

Pickett worked closely with Humans of New York founder Brandon Stanton to find him families to interview after Stanton reached out to the hospital earlier this year.

Courtesy of Sharon West
Grace West with Brandon Stanton, founder of Humans of New York

“It was extraordinarily serendipitous,” Pickett told TODAY. “He had no touch with the pediatric cancer community, no knowledge of anyone affiliated, but he just had in his heart that there was so much injustice around the idea that a child would get cancer and he decided to do a series on it.”

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Pickett said she’s never seen a campaign have such a big impact in such a short period of time.

“This is such a fundamental grassroots effort,” she said.

Over the past two weeks, 90,000 of you donated nearly $3.4 million to help fight pediatric cancer. That is a staggering amount of money. Thank you. For those of you who might not have been in a place to contribute financially, thank you so much for engaging with this difficult material. The support and solidarity you showed these families was just as valuable as the money itself. You are the most caring community of people on the Internet. That’s no exaggeration. It’s proven by the tone of every comment section. And it’s proven by the $8.5 million you’ve given to charity in the past 1.5 years. You are such a compassionate collection of people, and I can’t thank you enough for all that you’ve contributed to HONY. Lastly, thank you so much to Dr. O'Reilly and the Department of Pediatrics at Memorial Sloan Kettering for making this series possible. Special thanks to Nina Pickett and Rachel Corke, who paved every stone on my path. I’ve got one last story to leave you with. Last night you raised over $1 million in honor of Max to research and cure DIPG—the brain tumor that killed him. Dr. Souweidane tells me that this money represents the “single greatest leap forward” in his personal crusade against DIPG. When I interviewed Julie a few days ago, we were sitting on a bench in Madison Square Park that had been dedicated to Max. The plaque listed all the things that Max loved, and one of those things was ‘millions.’ I asked Julie what that meant. ‘Max’s uncle Charley gave him one hundred dollars,’ she told me. ‘And Max kept saying that one day he’d have a million.’ So thank you, everyone, for giving Max his million. I’ll be leaving the fundraiser up all day, for anyone who would still like to donate. Link in bio.

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Stanton and Humans of New York did not return emails seeking comment for this article.

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Aside from the money raised, Pickett said the biggest gift the series has provided has been the voice given to the pediatric cancer community — the patients, their parents and the doctors, nurses and scientists trying to cure the children.

“We know how isolating this disease is. We know how people back away. We know how families really need to uproot and get closer to treatment centers and leave their communities, and we know the fear they live with,” she said.

“Brandon gave voice to that. Their story was every child’s story. The fear and the anguish that the parents portrayed is any parent’s fear and anguish.”

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Only about 4 percent of federal research funds is earmarked for pediatric cancer, Pickett said. Pharmaceutical companies have little interest in developing therapies targeted at pediatric malignancies because the volume doesn’t make it worth it, she said.

“If you have 12-15,000 children a year diagnosed with cancer, that’s considered very, very rare. Thank goodness,” she said.

But that means federal dollars instead go toward research in colon, breast, lung and other types of cancers instead.

Courtesy of Sharon West
Grace during a hospital treatment.

The experimental treatment Grace received was developed with $2 million in funding raised by a group of parents whose children had neuroblastoma.

“It was selfless of those parents to do that, because for a lot of them, I’m sure it wasn’t in time to save their own kids,” said Grace’s mom, Sharon West.

West hopes the Humans of New York project will give similar hope to other parents like herself, as well as raise awareness among people who previously knew little to nothing about pediatric cancer and why funding is so crucial.

“I want people to walk away know that every dollar they give is really changing lives and making a difference,” she said.

(3/6) “I wasn’t going to give up. We tried taking Grace to another hospital but they told us the same thing: ‘There’s nothing we can do.’ But then we brought her to Sloan, and they told us: ‘We think there’s one more thing we can try.’ It was an experimental antibody called Humanized 3F8. It triggered Grace’s immune system to attack her cancer. It was so painful. It felt like she was getting a root canal over her entire body. After two rounds of treatment they did another scan. They wanted to see if there was any progress. The therapy was so painful that if it wasn’t working they wanted to stop. They called me in the office to give me the results. They told Grace to wait outside. I was so nervous. I could barely stand. When I walked in, nobody was saying anything at first. I thought: ‘Oh, God. They don’t want to tell me.’ Suddenly they said: ‘This is amazing. It’s never happened before.’ And they held up her scan and the cancer was gone. It had been everywhere: her pelvis, her skull, her bones, her arms. And now it was gone. All of us started crying.” -------------------------------------------------------- You may remember the post from a few days ago that told the story of The Band of Parents, who raised $2,000,000 to fund the development of an antibody. Humanized 3F8 was that antibody. Grace’s life was saved through their efforts. Right now we are holding our own fundraiser to help the team at Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. As you can see, this research saves lives. There are three days left. Over 33,000 people have donated so far and we are nearing $1.3 million. It would be amazing if we could reach 50,000 donations by the end of the series. Even if it’s a small amount, please consider donating. Link in bio. Also, you can follow Gracie: @cookiescrumblers

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Grace, who hopes to become a pediatric surgeon one day, was declared cancer free last December after years of excruciating treatments. She once underwent radiation so strong that her mother couldn't sit next to her for two weeks.

Yet, she always adhered to a personal motto that advocated choosing to be "happy and positive" no matter the circumstances. She also maintained a sense of humor: She named her dog Topy, after her first chemotherapy drug, Topotecan.

Grace said she has high hopes for the Humans of New York project.

“I think it will help other kids like me, and it will make changes and help lead to cures for cancer," she said. "The ‘Band of Parents’ raised $2 million for the treatment that saved my life. With $3 million they can go farther to create cures. I hope people learn that a little can go a long way in making a difference in someone else’s life.”

Follow TODAY.com writer Eun Kyung Kim on Twitter or on Facebook.

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