Ep.286 – DINNER BITES: Jake Burke: Cure NF with Jack

·46 min·4 clips

A doctor casually diagnoses a toddler with neurofibromatosis, leaving his parents stunned and searching for answers.

The episode begins with hosts Ryan Eversley and Sean Heckman introducing Dinner Bites, a short-form version of the Dinner with Racers podcast sponsored by Continental Tire. They note May is NF awareness month and have Jake Burke on to discuss the Cure NF with Jack charity. Burke shares the origin story: in 2006, his son Jack was diagnosed with neurofibromatosis after a doctor spotted cafe au lait spots during a routine visit for a cold. He describes NF as a genetic disorder causing tumors along nerve endings, with no cure initially, affecting 1 in 2,500 births. Burke explains the charity started in 2008, focusing on research without using funds for Jack's personal care. He details how the racing community, through events like Racing for Research in 2011, became involved, with drivers like Andy Lally and Spencer Pumpelly offering support. Burke discusses the complexity of NF, where tumors can be fatal if located in critical areas like the brainstem. He highlights recent progress, including two FDA-approved drugs that reduce tumor size, such as one that helped a young man named Philip Moss. The charity now focuses on biomarker research to detect when NF tumors turn cancerous, gene therapy, and quality-of-life issues. Burke emphasizes collaboration among NF nonprofits and advocacy for federal funding after a $25 million cut. He shares personal motivations, crediting his son Jack for inspiring his drive, and notes the importance of unaffected individuals in the fight. The episode concludes with Burke directing listeners to curenfwithjack.org for donations and awareness, and a humorous anecdote about Andy Lally calling everyone 'Hey buddy.'

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