Megan Nacar, Senior Director of Growth, Genomic Newborn Screening at GeneDx, Board Advisor at Helio Genomics, shared a post on LinkedIn:
“One of the hardest truths in precision medicine is this: the science in pediatric disease often moves faster than the systems built to deliver it.
This gap is especially visible in pediatric cancer care. Did you know that all pediatric cancers are considered rare? That’s why innovation, data sharing, and genomic tools matter so much. When patient populations are small, every insight has the potential to shift outcomes.
At today’s West Los Angeles Cycle for Survival ride, we heard from Dr. Andrew Kung, Chair of Pediatrics at Memorial Sloan Kettering Cancer Center. Afterward, I had the chance to speak with him about where the field is headed, from whole genome sequencing to long-read technologies, and what it will take to bring these tools closer to routine clinical care.
In my work at GeneDx advancing genomic approaches in pediatric disease, I see this same challenge every day. The science moves forward, yet the work ahead is making sure access and implementation keep pace.
And that reality particularly feels personal to me. Two years ago, while helping care for my dad during his diagnostic journey, I kept asking the same question: how can so many powerful tools exist, yet still feel out of reach for families?
Diagnostic odysseys should not still be as common as they are. Bridging the gap between what’s possible and what’s accessible is one of the most important challenges ahead for all of us working in precision medicine.
Cycle for Survival has now spent 20 years funding rare cancer research, and it is always meaningful to be part of this community pushing progress forward.
If you would like to support rare cancer research, you can still contribute here
Thank you to those who have supported my ride and donated to this cause that’s so close to my heart. Thank you to my friends and colleagues that joined me on this ride; and especially to Megan, who didn’t give up on me and encouraged me to rally a team again this year.
What a way to kick off my weekend, and especially meaningful heading into Rare Disease Week. Happy Saturday, y’all.”
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