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Children's Tumor Foundation

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Young Investigator: Q&A with Libby Williams on Targeted Treatments for NF2-Related Meningiomas

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help them get established as independent NF investigators and pursue bold, innovative projects designed to improve care and uncover new treatments for people living with NF. Since its inception, several YIAs have made groundbreaking research findings and notable publicatio...


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Expanding Access to Specialized NF Care in Western New York

Adults living with neurofibromatosis and schwannomatosis (NF) in Western New York now have expanded access to coordinated, specialized care close to home. Roswell Park Comprehensive Cancer Center in Buffalo has joined the Children’s Tumor Foundation’s NF Clinic Network (NFCN), bringing its Adult Multidisciplinary Neurofibromatosis Clinic into the first nationwide network dedi...


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Inside a New Clinical Trial for NF2-SWN: Early Progress on Trineumin (PRG-N-01)

The Children’s Tumor Foundation recently hosted an NF Knowledge Series webinar on a CTF-funded clinical trial in Korea evaluating Trineumin (PRG-N-01), an investigational therapy being studied in people living with NF2-related schwannomatosis (NF2-SWN).


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Story of NF: Emily H.

I was in 5th grade, and I was “sick” at least two or three times a week for about 2.5 weeks. I ended up with the diagnosis of a brain tumor. I had surgery a couple of days later. My neuro team noticed the brow spots (cafe au lait spots) on my body. I had always called these spots birthmarks.

They suggested going to an NF specialist. A few weeks later, my parents & ...


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Connecticut Becomes Second State to Establish NF Awareness Day into State Law

February 14 now carries even greater meaning in Connecticut.

With the passage of “An Act Designating Neurofibromatosis Awareness Day,” Connecticut has ...


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