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We learned of Parker’s diagnosis of NF1 at his 18 month checkup when we pointed out his cafe au lait marks. They did a blood test to confirm; Parker’s dad also has NF1.
We are fortunate that NF doesn’t impact our day to day life too much. After the initial diagnosis we had doctor appointments every 3 months or so and Parker spent his preschool years going to speech therapy. He had his first MRI at 18 months. It was then they found the 2 optic gliomas.
Roger Packer, MD, from Children’s National Hospital in Washington, DC, organized an NF1 Low-Grade Glioma (LGG) meeting in Bethesda, MD, on Feb 19-20, 2019. NF1 LGG are brain tumors that 25-30% of NF1 patients, especially in the pediatric population, are at risk of developing.
NF knows no boundaries, and that includes Asia, which accounts for 60% of the world's population. We're pleased to announce that the Children's Tumor Foundation, in partnership with WuXi AppTec, is spreading awareness of NF in China at the 2019 WuXi Healthcare Forum being held this week in Shanghai.
I was diagnosed with NF1 when I was two years old. I have had spinal fusion surgery and suffer back pain due to a fibroma in my back. It makes it hard to work sometimes.
On Sunday, October 13, Baylie Jabben will run the Chicago Marathon with the Children’s Tumor Foundation NF Endurance team for the third time. An avid runner and faithful CTF supporter, Baylie not only runs on our team, fundaises to support our efforts to fund research, but also recruits her friends to join her each year! We asked her to share what it means to be a part of our team and why she keeps coming back.