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A Pleasanton-based nonprofit, which was formed last year and is dedicated to raising awareness and research money for pediatric brain cancer, is hosting its second fundraising gala after last year’s event helped raise $100,000 that recently went toward research.
Sandeep Kolte, one of the parents behind the Neev Kolte and Brave Ronil Foundation, told the Weekly however, that the donation and the upcoming gala are just one of many recent endeavors he and other people involved in the foundation have been up to this past year.
These efforts included lobbying trips to both the state and U.S. capitols as well as local efforts from Pleasanton kids who volunteered to try and get as many Bay Area cities as possible to proclaim September as Childhood Cancer Awareness Month. He said his main goal is to eventually create a movement for not just the specific type of brain cancer that killed his son Neev, but for childhood cancer in general
“What we have today for breast cancer (awareness), why can’t we have that for the kids?,” Kolte said.
Diffuse intrinsic pontine glioma, otherwise known as DIPG, is a rare type of brain tumor that took the lives of 6-year-old Neev Kolte in 2021 and 14-year-old Ronil Mehta in 2018.
After the Kolte family’s first stint at philanthropic work through their older son Rayaan, who put together a toy drive for the hospital where his younger brother was treated, Kolte and his wife Misha Mehta decided to pair up with the parents of Ronil Mehta to create the nonprofit in October 2022. (There is no relation between the families despite a last name in common.)
One of the foundation’s most recent accomplishments was that $100,000 grant it was able to contribute to Dr. Sabine Mueller and Dr. Sebastian Waszak from UCSF.
“Only 6% of all federal funding is allocated towards ALL pediatric cancers, making it critical for family foundations such as Neev Kolte and Brave Ronil Foundation to support research advancement in pediatric brain tumors,” Mueller said in a Sept. 5 press release from the foundation.
He said the foundation’s medical board sent them the proposals of which clinical trials they should donate to and coincidentally enough, Mueller happened to be the same doctor who treated Neev.
According to the press release, the grant will specifically fund the UCSF doctors’ “groundbreaking research on cell-free DNA whole-genome sequencing” for ongoing Pediatric Neuro-Oncology Consortium clinical trials.
“This research aims to measure residual disease and antitumor response in DIPG clinical trials,” according to the press release. “This is critical research as it will enable doctors and families with a new, novel and noninvasive way to assess treatment response, bringing us one step closer to better treatments and hope for families affected by these devastating diseases.”
Kolte said he hopes the upcoming BORN Gala, which stands for “Because of Ronil and Neev”, will be as successful as the last one. According to the foundation’s website, the new fundraising goal is set at $150,000.
The gala will be held at the Blackhawk Museum in Danville on Nov. 17 at 5 p.m. and will feature a silent auction, live music and a three-course meal. Tickets will go for $200 per person and most of the money will go toward funding research for DIPG.
But the gala and recent grant donation are just some of the many things Kolte and others have been up to over this past year.
One of the most notable local endeavors Kolte brought up was how four Pleasanton high schoolers got 33 Bay Area cities to pass a proclamation declaring September as Childhood Cancer Awareness Month.
Supreethi Jammalamadaka is a mom of Dhruv Pandrangi, a freshman at Foothill High School and one of the four teens who called around 100 Bay Area municipalities regarding the proclamation.
She first met Kolte in 2020 when Neev was still alive. She was one of the many neighbors who dropped off food to the family so they could focus on taking care of Neev.
“Something about the way Sandeep spoke to me was really really touching and moving,” Jammalamadaka told the Weekly.
So when she was trying to find a cause for her son to stand up for, she couldn’t think of a better endeavor after Kolte told her about his ambitions for getting the entire U.S. to recognize September as Childhood Cancer Awareness Month.
“The reason I have also consciously chosen to help them is because I see in them a certain selflessness and a certain mindset to help others,” she said.
Jammalamadaka said at first her son and the other kids needed a little help but after they got the proclamation approved in Dublin on Sept. 1, they really hit the ground running and took charge in getting the other 32 Bay Area cities to approve similar proclamations.
She said the main reasons the other cities couldn’t approve the proclamation is because of scheduling issues but that the kids were told to try and apply next year.
She also said she and the four kids want to continue to do everything they can to continue to help the foundation and its effort to raise awareness through these proclamations and that her son even accompanied Raayan to the U.S. Capitol to advocate for laws that would help combat childhood cancer.
Kolte said it’s those types of grassroots, on-the-ground efforts that help the foundation because it gets the name and the overall issue of childhood cancer — specifically the brain cancer that killed his son — out there.
He also spoke on his older son’s continued toy drive, which Raayan hopes to get up to 1,000 donations this year, and his wife’s continued lobbying trips to the U.S. and state capitols as many other ways the foundation has been busy.
But he once again emphasized how little funding there is from the government that goes toward pediatric cancer research and how these families need more attention. That’s why he said the foundation spotlighted one family who is or was affected by childhood cancer every day during September so that people hear their stories.
“We don’t want to make money out of this,” he said. “What we want to do is make people more aware.”
Learn more about the foundation and its fundraiser at www.neevronil.org.
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