Glimmers Foundation

Glimmers Childhood Cancer Foundation President Vanessa Decker didn’t know what to do with herself when her 13-year-old daughter Ava passed away on May 9, 2024, just 18 months after being diagnosed with osteosarcoma, a rare and very aggressive bone cancer, devastating the family already exhausted from a battle with the disease. 

Fortunately, Ava did. 

“Even while she was fighting to survive, it was Ava’s wish for me to start a child cancer nonprofit,” Decker explained. “So immediately, the very next day when she wasn’t here physically as a human anymore is when Glimmers began. I poured all of my grief and trauma into focusing on that, trying to be productive with every ounce of the wisdom of my grief, to be as strong as she had been.” 

Ava’s desire was to drastically reduce the sobering statistics about childhood cancer, a situation that is exacerbated by the fact that she received the same treatment for her cancer that was created more than half a century ago. While treatments and prognoses for adult cancer have had major advancements over the years, progress in children’s cancer treatments have stayed stagnant, particularly for the less common ones such as sarcomas, largely due to a dearth of funding for research and trials to discover less toxic and more effective treatments. 

Decker was not only disappointed but also shocked to discover that while pediatric cancer is the leading cause of death by disease in children and teens in the United States, only 4% of the federal cancer research funding is for pediatric cancer. 

Santa Barbara-based Glimmers Foundation was created to combat that issue based on Ava’s experiences and wishes, Decker said. 

“From the beginning, most everything we do has been based on her instructions,” she said. “Ava knew what she was doing when she was facing terminal cancer at such a young age. She looked at why she was in this position and why other kids have been for so long, either dying or suffering from the toxic treatments that have hurt them for the rest of their lives. She looked at it as this very complex issue and sliced through the BS to tell us this is exactly what needs to happen.”

Which is why, per Ava’s instructions, Glimmers is a nonprofit where there are no salaries, no paid employees, no donor money going to overhead, no heavy mailers or any marketing. Instead, every dollar raised goes toward funding research and clinical trials at major hospitals and institutes around the world, leveraging donations to find solutions faster. It’s all part of a lofty aim to be a beyond integrity organization that can serve as the catalyst in changing the approach to childhood cancer. 

Getting a drug across the finish line to actually help kids with cancer can ultimately cost as much as a billion dollars, Decker said. Glimmers’ approach is to provide money that is used as seed funding to be able to receive grants from the National Institute of Health, National Cancer Institute, and other governmental or private agencies. Decker says that kids’ cancer treatments that are in the not yet FDA-approved clinical trial stage, 50% of progress relies on nonprofits like hers. 

But even then, the foundation holds hospitals accountable to the same set standards it set for itself.

“We don’t just hand over a check,” Decker said. “We literally make their legal team draft agreements to make sure that every penny’s going to the projects. We negotiate the contracts so none of it’s going to go to CEO salaries or unnecessary admin costs, which is very common in the field. Ava wanted us to change that.” 

So much so that those who received the funds are a little bit annoyed…but also suitably impressed and eventually agreeable. 

“One hospital told me, ‘You’re so difficult, Vanessa. We’ve never had a nonprofit be like this.’ And I thought, ‘Wow, I’m really proud of that.’”

She’s also proud of the level of support she’s received in the community and worldwide, people who get involved purely on a volunteer basis, including a huge contingent of members of the organization’s three boards. 

“I tell them you have to do this because you believe in the mission,” Decker said. “You’re going to get really creative on utilizing your available resources and expanding your network to those who are uniquely qualified to not just jump in with ideas, but to roll up your sleeves and get creative to make this a really well-oiled machine that isn’t using any donor funding for anything but research.” 

Beyond providing seed money, Glimmers also is working to increase funding coming out of Washington, even in the face of reduced budgets from the federal government. 

“The problem is very much politically and socially related,” Decker said. “We also have a political arm where we talk to policymakers, holding their feet to the fire on educating them, but also saying, ‘What are you going to do in Congress to help move the needle?’ Kids Cancer is a bipartisan issue and we have people across the country who want to harness our voices to make things change.” 

Glimmers also supports kids with cancer and their families locally, using a network of counselors who provide therapy services for free, and granting as many wishes for the afflicted children as it can through in-kind donations for goods and services, such as hotels and restaurants. The nonprofit also supports siblings who may feel guilty about their possible resentment at not having equal amounts of their parents’ attention as the child with cancer. It’s also set up clubs in local schools for students who want to get involved. 

“It’s about getting people together who want to be part of this movement, not just wealthy donors, but also teenagers and younger kids doing lemonade stands, or who want the edgy experience of engaging in public speaking to spread advocacy and awareness,” Decker said. “We’re not just trying to fund raise, we’re also trying to plant seeds for future oncologists and researchers who can then make a direct difference.” 

It was Ava who also inspired the foundation’s name. 

“We were in the hospital room and it was the golden hour, right after sunset, which was Ava’s favorite time,” Decker explained. “It was before she got chemo, so she was feeling okay, and the dust was dancing in the air on the sunbeam that was coming through the window. I remember Ava said, ‘It’s so glimmery, and I feel so glimmery inside.’ I’d have to say that the brightest glimmer other than a cure is that quality of presence to what’s important. It’s about finding the glimmers, whatever they are for you. Holding onto those moments and doing the work that needs to be done keeps calling me every day. Without it, I think grief would just consume me.”  

Visit www.glimmersfoundation.org