We’re doing things slightly differently this time. We’re focusing on kids with cancer. In August of this year, California’s youth who’ve been impacted by the devastation of pediatric cancer and rare diseases, went to Sacramento to inaugurate the first Pediatric Cancer Advocacy and Awareness Day, and lobbied California legislators to designate September 2026 as Childhood Cancer Awareness Month and sign on as co-sponsors with concurrent resolutions in the Assembly ACR 213 and the Senate SR 126, which were adopted and passed unanimously. This could not have happened without the support of my friend, Misha Mehta, who lobbied hospitals, companies, and foundations for sponsorship and funding, so that families who have been affected by pediatric cancer could travel from all over California as advocates for their loved ones without having to worry about expenses. 

The first Pediatric Cancer Advocacy and Awareness Day was supported by multiple foundations and organizations, including but not limited to Amgen, Everyday Life Foundation for Rare Diseases, Stanford Medicine Children’s Health, the UCSF Oncology Department,the Neev Kolte Foundation, and Joey’s Wings. 

Misha’s youngest son Neev Kolte, was diagnosed with DIPG, an incurable brain cancer, in August of 2020. At the time, there was no available treatment, and doctors told Neev’s parents to go home and create memories. Misha and her husband Sandeep refused to give up, and they fought to keep hope alive for Neev, finding phase 1 clinical trials for him. Neev, too, did not give up. He learned to walk four times in the fifteen months after his diagnosis, and just kept going. He passed away a month after his sixth birthday. 

Misha and Sandeep still have not given up on finding a cure, or a treatment for DIPG. They established the Neev Kolte Foundation, in his memory, to lobby for funding and research.

I spoke with Misha about the current state of funding for pediatric research, how the youth-led advocacy day went, and what her hopes are for the future. 

ITV: Does the resolution for Childhood Cancer Awareness Month need to be done every year? 

Misha: Yes, it does. We did it last year, and we did it again this year.

ITV: Why does it have to be done every year? 

Misha: Well, it would be easier if we could have the Governor do a proclamation. We tried to ask Governor Newsom’s office to help us with a proclamation, although we would still have to do it every year. Their staff said no two years in a row.

ITV: Why would they say no? 

Misha: The staff said that they do enough with kids for early education and pediatric mental health, and they didn’t think it necessary. I hope to have a different experience with the next governor. 

ITV: For the Pediatric Cancer Advocacy and Awareness Day, I understand that you obtained funding via sponsorships and grants, is that correct? 

Misha: Yes, my goal was to get families from all over California to be able to come to Sacramento without having to worry about travel and hotel costs, and making the event free for everybody. I reached out to hospitals and pharmaceutical companies. I really wanted to make it a collaborative effort, and also to have it be youth-driven. I didn’t want the kids to worry about trying to obtain funding - that’s beyond their skillset. But the rest of it is youth-led. My son Rayaan created the website, the kids created graphics to post on social media, and they called the legislators to arrange and schedule in-person meetings for the specific day. 

ITV: Can you tell me a bit about the Comprehensive Cancer Control Plan (CCCP) and how you were able to add pediatric cancer to it? 

Misha: So the CCCP is a 10 year plan that provides guidance to the state on how to relieve the burden of cancer. Prior to this year, they had not included pediatric cancer at all. I reached out to the cancer coalition CDOC (California Dialogue on Cancer), and presented them with the case to include it in their plan. I was told to wait a year, as they were creating a new 10 year plan; they agreed with me that it was a misstep not to have pediatric cancer. Since then, I have joined CDOC and spent the last year leading and drafting the childhood cancer chapter. I’m now part of the Patient and Community Advisory Group which provides ongoing input to CDOC leadership on patient, survivor, and community perspectives, and advise on development and implementation of the CCCP. 

ITV: What would you like to see happen next? 

Misha: For the Pediatric Advocacy Day, we will be repeating this next year, and hopefully with the benefit of hindsight, we’ll have a smoother experience. We’d like to expand it to a two-day event, with educational sessions. We’ll be there again to advocate for another resolution, but what I would really like to see is a budget-line item for pediatric cancer research. This will definitely be a hard ask, especially given all the budget cuts, but other states with smaller budgets have been able to do this. Governor Andy Beshear in Kentucky secured $14 million to fight pediatric cancer in 2024; in Florida, Governor Ron DeSantis awarded $30 million in grant funding to four specialty children’s hospitals to advance treatment and find cures for cancer. I find it baffling and inexcusable that California cannot set aside any funding for pediatric cancer research and treatment. But we would love to find someone in the legislature who is willing to champion a budget-line item. We could start small, with an ask of just a few million, instead of $10 million. It would be a drop in the bucket compared to all the other items. 

ITV: What can we do to help? 

Misha: Attend our gala on September 26. Help us champion legislation that would advance research, treatment, support, and funding for pediatric cancer. Attend Curefest. Learn all about us and interact with us on our social media. 

Here are a few facts you might not know about pediatric cancer:

• Pediatric brain tumors are the leading cause of death by disease.
• Federal funding cuts to pediatric brain cancer research are 'taking away hope' from families.
• NIH pulled off a 'near miracle.' Scientists say there's still a problem.

ICYMI

• Your Local Epidemiologist has a great guide to the fall 2026 vaccines. 
• The FDA has approved 4 updated COVID-19 vaccines for the 2026-27 season for Americans, as cases of COVID are climbing now, especially in the South and West.
• Shingles vaccine found to reduce heart disease risk.  
• Governor Newsom announced that the state would supply free emergency albuterol inhalers to every public and charter school in CA through a partnership with Amneal Pharmaceuticals and an expansion of CalRx®. 

• The list of foods that have been recalled is growing: 

  • Frozen buffalo chicken - recalled for being produced without inspection. 
  • Whole Foods guacamole, salsa dips across 13 states due to possible salmonella contamination on jalapenos. 
  • 30,000 lbs of beef of Argentinian raw beef distributed to Florida and Texas recalled due to lack of inspection.  
  • Pistachio nut butter distributed to Walmart across 19 states due to possible contamination with salmonella.
  • Northwest Naturals pet food due to possible contamination with salmonella and listeria.
  • Hodo tofu distributed across 29 states due to possible contamination with printer ink.
  • 2 lb bags of Lundberg Organic Jasmine Rice due to possible contamination with “foreign material.” 
  • At the beginning of the second Trump presidency slashed a large number of federal government jobs, including many that are connected to the food supply.

Have feedback for us? Comments or suggestions? Email us at [email protected]. Join us at Indivisible Tri-Valley