Saturday nightwe  finally got to our local movie theater to see 50/50, a film starring Seth Rogen and Joseph Gordon-Levitt based on the true story of Will Reiser (Producer Red State Diaries, Da Ali G Show), who wrote the film.

**50/50 is the story of a guy’s transformative and, yes, sometimes funny journey to health – drawing its emotional core from Will Reiser’s own experience with cancer and reminding us that friendship and love, no matter what bizarre turns they take, are the greatest healers.

Read a piece Will Reiser posted last month in Esquire, “How To Be Really, Really Sick: Advice and affirmations on living with illness from the cancer survivor.”

Will Reiser was diagnosed with a rare form of spinal cancer at 25, when doctors discovered a cancerous tumor crawling along Reiser’s spinal column. I found this film incredibly moving because it recalled memories of my friend Craig Nolan, who in 2005 lost his battle with anaplastic large-cell lymphoma (ALCL), a rare, aggressive form of non-Hodgkin’s lymphoma that arises from T-cells (the reason I set out to create MarbleRoad).

In the film, Adam (played by Joseph Gordon-Levitt) is diagnosed with a malignant peripheral nerve sheath tumor, aka “malignant schwannoma” or “neurofibrosarcoma”.

Listen to this interview with Will Reiser from Fresh Air on NPR (while noting that the characters of Seth and Joseph are actually employees at a public radio station); and go see this movie.

Soft tissue sarcomas are very rare, and represent only about 1% of all cancers diagnosed each year. Neurofibrosarcomas are particularly rare, as they comprise only about 6% of that 1%; and are particularly interesting in a clinical sense because they are caused by a mutation on a tumor suppressor gene (p53) on the 17p chromosome. About half the cases are diagnosed in people with neurofibromatosis; a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be benign or may cause serious damage by compressing nerves and other tissues.

If you have some time, head over to the Children’s Tumor Foundation website. The Children’s Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

The mission of The Children’s Tumor Foundation is to:

• Encourage and support research and the development of treatments and cures for neurofibromatosis types 1 and 2, schwannomatosis and related disorders;
• Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information;
• Assist in the development of clinical centers, best practices, and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals; and,
• Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population’s understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources.

1 thought on “50/50 and Neurofibrosarcoma”

  1. Cathryn Clinton says:

    Thank you for bringing this to my awareness. Both my son and I have neurofibromatosis. Hope has so many faces.

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