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The Children’s Tumor Foundation Debuts New Comic During Neurofibromatosis Awareness Month

By May 22, 2020February 28th, 2024NF2-SWN, Press Release, Story of NF

Understanding mpp-sun - a comic strip with a man standing in front of a window.In honor of NF2 Awareness Day, the Children’s Tumor Foundation is proud to announce their newest resource, Understanding NF2-SWN, (2024 EDIT: UPDATED TITLE) an eight-page educational comic book that tells the true story of Billy Nguyen, who was diagnosed with neurofibromatosis type 2, or NF2, at the age of six. NF2 (since 2022, referred to as NF2-related schwannomatosis, or NF2-SWN) is characterized by the development of benign tumors on the hearing nerves, and sometimes leads to partial or complete hearing loss or other difficult problems.

The comic book is freely available to download and read at this link. 

The story tracks Billy’s childhood struggle to understand his diagnosis and navigate this difficult disorder. His Vietnamese parents spoke some English, but all the medical terms were too overwhelming, leaving young Billy to make a lot of adult decisions on his own.

A memoir-style comic, Understanding NF2-SWN is part of the Children’s Tumor Foundation’s efforts to raise awareness and create new and interesting resources for the millions of people worldwide who live with this rare disease. An entire team of artists was engaged in the work on this story in order to make NF2-SWN more accessible through the use of graphic medicine and visual storytelling and to reach out to the greater community with a story of rare disease.

Now a pediatric resident physician at the University of California, San Francisco, Billy was a part of the creation of the comic from the beginning. After reviewing the final draft of the comic, Billy said, “I’m speechless. I think this comic is so beautiful it still blows me away. I’m honored to have my story told in this way.”

Understanding NF2-SWN was initiated by CTF’s Director of Communication Vanessa Shealy Younger, who wrote the script. The primary illustrator for the comic is Eisner-nominated artist Kevin Colden, who has a personal connection to NF through his wife, graphic novelist Miss Lasko-Gross. “My wife’s cousin has NF1, so I’ve personally seen how NF can affect families. Working with this script and being able to bring Billy’s story to life was a wonderful opportunity,” Kevin remarked. Colorist Chris Sotomayor and letterer Nate Pride round out the creative team.

This is the third comic produced by the Children’s Tumor Foundation, which previously created Moxie and Sparx Explain NF1, which is also available for free from the CTF website at

Released on the occasion of NF2 Awareness Day, the comic is one of many stories the Foundation has shared in order to highlight the critical need for NF research. This year, our awareness month campaign is focused on the external things the NF community is doing to raise the profile of this rare disease, and the internal struggle patients experience living with a genetic disorder that manifests differently in each NF patient, sometimes externally, and often internally.

The Understanding NF2-SWN comic is freely available AT THIS LINK.

Read more of Billy Nguyen’s personal story AT THIS LINK.[/vc_column_text][/vc_column][/vc_row]