Max Lacewell Foundation—With community support, this local family turns a tragedy into a legacy

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May 2017 View more

Imagine learning that your child has a rare, inoperable brain tumor, for which there is no cure. Doctors will only be able to prolong your child’s life by a few months using radiation and experimental chemotherapy.

That was the heartbreaking news David and Leanne Lacewell received in 2008 about their six-year-old son Max. “Max was just the neatest kid. He had such a big personality,” his mom Leanne Lacewell fondly remembers. “He was always thinking about others. His favorite things in the world were his family, Legos, Star Wars and sushi.”

Max was diagnosed with diffuse intrinsic pontine glioma (DIPG), a pediatric brain stem tumor that affects only 150 to 200 children in the US annually. Because it is so uncommon, it receives very little research funding and its treatment has remained unchanged for the past forty years. Lacewell has learned that pediatric cancer research funding amounts to less than three percent of the total funds allotted for cancer research, and that pediatric brain tumor research receives barely a fraction of those dollars. “When Max was diagnosed, he had no medical options to help him. We wanted to change that for future families facing this diagnosis,” she explains.

The Lacewell family founded the Max Lacewell Foundation in 2010. Its mission is to fund a full-time research scholar at Ann and Robert H. Lurie Children’s Hospital dedicated solely to finding a cure for DIPG. In order to permanently endow the position, the foundation must raise $1 million; so far it has received over $700,000 in donations. Lacewell hopes to raise the total amount within the next two years and has been working with the hospital to fill the research position.

“It’s difficult to raise money for research dollars because people don’t immediately get to see the impact of their donations,” Lacewell explains. That’s why the family is amazed at the level of support the foundation continually receives. “The community has been fantastic in its support and patience while we work to fund this position. Most of our support comes from the Naperville area. It’s truly amazing to think that the Naperville community has essentially funded a position at Lurie Children’s Hospital.”

The Best Fundraisers ‘EvUh’

The foundation hosts three main fundraisers throughout the year. Its Best Day Evuh Golf Tournament will be held this year on June 12 at the Bolingbrook Golf Club. The event features a day of golf followed by cocktails, dinner, contests and raffles. The Best 5K Evuh Race will be held at the Bolingbrook Golf Club in October. This family-friendly event also features a one-mile fun run, music, refreshments and a visit by Star Wars characters. The foundation’s biggest event of the year, The Best Day Evuh Gala, will be held November 18 at Bobak’s Signature Events. This formal event features dinner, live music, raffles and auctions. Details about all these events can be found at maxlacewell.org.

Once the million-dollar fundraising goal is met, Lacewell wants to give back to the community. “We recently installed a buddy bench at Welch Elementary School. It would be really great to do some more fun things in Max’s name.”

Max Lacewell, aka Little Dude

After battling the aggressive cancer for nine months, Max passed away in his Naperville home on July 4, 2009. He lives on in the hearts of his family and in the foundation that bears his name. “We miss him everyday,” Lacewell says. “It helps me feel better that perhaps his name will be attached to a cure someday.”