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A new Pleasanton-based nonprofit foundation focused on supporting pediatric brain cancer research is gearing up for its first-ever fundraising gala event this weekend.
According to two of the parents behind the Neev Kolte and Brave Ronil Foundation, the goal is to raise money for medical research projects aimed at addressing diffuse intrinsic pontine glioma, otherwise known as DIPG — which is a brain tumor that took the lives of 6-year-old Neev Kolte in 2021 and 14-year-old Ronil Mehta in 2018.
“That is one way to remember Neev,” Sandeep Kolte, Neev’s father, told the Weekly. “All of this is in his memory.”
According to the National Cancer Institute, DIPG is a rare, fast-growing tumor that forms within cells inside the stem of the brain and usually is found in children. The tumor tends to spread in and around the brain stem, making it hard to treat — due to the lack of research and nature of the tumor, it also means that it has a 100% fatality rate, according to Misha Mehta, Neev’s mother.
That’s why after creating the organization in October 2022 and then bringing Ronil’s parents Milan and Manisha Mehta of Fremont on board, the foundation will be hosting its inaugural fundraising event since achieving nonprofit status in April in order to continue the work toward finding a cure. (There is no relation between the families despite a last name in common.)
The BORN Gala, which stands for “Because of Ronil and Neev”, will take place at the Crowne Plaza Ballroom in Foster City at 5 p.m. Sunday (Dec. 3) and will feature a silent auction, live music and a three-course meal.
Tickets will go for $150 per person and Misha Mehta said that most of the money will go toward funding research for DIPG.
As for how the funding structure will go, Misha Mehta said the foundation is a part of a research funding alliance that is made up of about 60 other similar nonprofits and that the alliance has its own medical advisory committee made up of about eight doctors across the U.S. who review all types of funding proposals relevant to DIPG.
Misha Mehta said that while in the last couple of years her family has donated their own money for the cause, she hopes that with this fundraising gala the foundation can close out a $100,000 grant that can specifically go toward DIPG research.
There are many different projects and ventures that Misha Mehta, being a scientist herself, wants to get involved with in order to bring pediatric brain cancer into the national spotlight and find ways to fund research, but she says the struggle is going to be a long one.
She said that as she waits for the medical advisory committee to get back to her with some of the proposals and projects they decide should receive funding during this upcoming funding cycle, Misha Mehta said she has a few in mind that she wants to see on the table.
She also said that apart from their work in supporting medical research, the foundation has been making strides in breaking down the medical silos in the DIPG and pediatric brain cancer world that not only separates data but also separates resources for families to get the help they need.
Sandeep Kolte said that since the creation of the foundation, they have been working with families in the U.S. and abroad to help them navigate the difficult and sometimes confusing world of DIPG in terms of treatment and resources.
He said through the foundation, families who have kids with DIPG can easily connect with nonprofits based on the resources that they need, instead of having to jump through hoops in order to obtain basic necessities like wheelchairs.
“It saves families time, because you just fill out one application and you’re done,” Sandeep Kolte said. “It takes like 15 minutes to fill it out. Whereas compared to like two, three years ago when I was going through this journey, I filled out 75 to 120 applications and each one takes about anywhere between one hour to four hours.”
He said he knows that time is precious when fighting this disease and that he really wanted to give the families more time with their kids who are fighting the disease through his foundation.
Their other son, Rayaan Kolte, is also continuing his work of supporting DIPG research through his toy drive that he started last year at Fairlands Elementary School. This year, they said that apart from Fairlands, Alisal Elementary and Harvest Park Middle schools have agreed to take part and they are working on getting Hart Middle School on board as well.
Neev’s parents each said that at the end of the day, they know it’s going to be a long time before they will see any progress in finding a cure, but in the meantime their main goals are raising awareness of DIPG and finding ways to either prolong the lifespan of those kids who suffer from the disease or reducing the number of deaths.
And the only way they can really do that is by finding ways like the gala to raise money and help fund the research for pediatric brain cancer, which they said is severely lacking in the U.S.
Sandeep Kolte also said that while the foundation specifically addresses DIPG right now, the goal will be to address all forms of pediatric brain tumors and then at one point in the long-term future, help anyone dealing with any form of cancer at any age.
He said that during a recent trip to Washington, D.C., he met with top medical institutions in the country who told him that eventually they could help him expand it to the other cancer communities.
“So that’s where I think the real value for this platform will be and there is nothing out there right now that helps patients in this way,” Sandeep Kolte said. “So it’s a lot of work, but I think we’ve started on that journey.”
Learn more about the foundation and its fundraiser at www.neevronil.org.
Editor’s note: A previous version of the story listed an incorrect residency for one of the founding families. The family of Ronil Mehta is from Fremont. The Weekly regrets the error.
