Zachary Crystal, 11, an erudite boy with a mop of dark hair and kind eyes, remembers his friend Nathan Carlsen with pride. Nathan had a passion for collecting Legos, which he loved to build. Nathan also enjoyed playing tag.
Although his friend remained positive, Zachary could see Nathan struggled with neurocutaneous melanocytosis, a rare form of pediatric brain cancer.
"I could tell he was tired out and worn out. He went all over the country to get doctors to try to cure it.
"He laughed a lot. (Before his illness) he was always energetic and always had a smile. He was such an enthusiastic person. He never complained -- even with his cancer," Zachary said on Thursday.
Nathan, an Addison Elementary School fifth-grader, died of the brain cancer on March 19, 2018. Now, his friends are raising funds for research into a cure.
This coming weekend, they'll host bake sales in Palo Alto to raise money for research into the rare and aggressive cancer that took Nathan's life.
"I feel really devoted to the fundraiser," Zachary said.
Called central nervous system melanoma or neurocutaneous melanocytosis, the disease is a non-inherited condition of the central nervous system characterized by melanocytic nevi — large moles in both the skin and the brain that can become cancers, according to the National Institutes of Health's National Center for Advancing Translational Sciences. Even when not malignant, prognosis is nearly 100% fatal and chemotherapy has not worked in the few patients who have received it.
Amid their grief, last year Nathan's family donated some of his tumor tissue for research to a tissue bank at the University of Pittsburgh Medical Center Children's Hospital of Pittsburgh in Pennsylvania, where researcher Dr. Miguel Reyes and his team focus exclusively on melanoma and congenital nevi such as what afflicted Nathan. Nathan's mother, Christina Raes, had also been considering fundraising for research, but amid grieving, she put the idea aside.
Then earlier this year, Zachary, now a sixth-grader at Greene Middle School, approached her with an idea to raise money for research through a GoFundMe page. Raes was ready to start the project, but she wanted 100% of the money to go to the research. She didn't want to spend part of it by forming a nonprofit group or by raising funds through an online organization that would take part of the money for its own overhead, she said.
So she approached Dr. Reyes and asked him to propose a project to fund. He said he had one languishing that wasn't likely to receive funding: a project to understand the underlying molecular nature of neurocutaneous melanocytosis. He and his team also want to find drugs that would extend life and potentially find a cure, she recalled.
Raes also discovered that the Children's Hospital of Pittsburgh Foundation had an option for all of the donations to go to the researchers. She and Zachary put together a fundraising page. It launched on the one-year anniversary of Nathan's death. In just two months, the site has raised $47,299 out of an initial $50,000 goal.
But the bigger aim is to raise $200,000. That's where the bake sales come in. They not only raise money, but they also raise awareness about childhood brain cancers and the particular form of the disease that Nathan had. About 3,000 children are diagnosed with pediatric brain cancer each year, Raes said.
Zachary started his campaign four weeks ago. At his first bake sale, he earned $360 plus a $500 donation from a relative, he said.
Marilyn Crystal, Zachary's mother, said the bake sales are also a way for the students, parents and friends of Nathan to heal.
"It was so hard for all the family friends and school friends, and particularly after seeing his parents fight every fight to save him," she said.
Making a contribution and taking action is a way to create a positive change in the face of something that can't be reversed or is devastating, such as the death of a child, Raes said.
Raising $200,000 won't all come from bake sales, so she hopes to approach larger entities such as foundations and donors who might be willing to contribute larger sums toward the goal, she said. The amount of money for research for pediatric brain cancers is small, so money must be raised through grassroots efforts.
"The National Institutes of Health grants less than 4% for childhood cancer and only a fraction goes to childhood brain cancer," Raes said. "What he had is none of those that are funded, and this type of cancer is not well understood."
The findings would also benefit other related cancers and diseases, she added.
Marilyn Crystal recalled that Nathan was "a very special boy ... kind of an old soul. Very mature, deep, strong and so sweet. He loved the planet, people, animals, and plants and trees."
And he had a motto:
Laugh a lot.
Zachary held a series of bake sales on Sunday, May 19, that included many of Nathan's friends and their parents at various locations in Palo Alto, including in front of Whole Foods Market, 774 Emerson St.; Lytton Plaza, 200 University Ave.; and the Midtown CVS Pharmacy, 2701 Middlefield Road.
This Saturday, May 25, they will host another bake sale near the Palo Alto Downtown farmers market from 10 a.m. to noon. They'll also join in the citywide garage sale on June 1 with a table on Kipling Street, across from Johnson Park.
Donations for the research project can also be made at givetochildrens.org/nathancarlsen.