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5 People Fighting Brain Tumors in the Public Eye

March 22, 2019 by Hayley Anthony

People in this community can probably name a few big names from the world of politics who fought brain tumors. But this week, we feature 5 people who are fighting brain tumors in public in their own ways. This includes a young woman with 1.5 million youtube followers, an E! Entertainment journalist, a NASCAR rookie, and a schoolteacher with a loyal audience of preschoolers.

Simone Giertz started with a punchline on YouTube. Now, she’s figuring out what to build next.

Robot builder Simone Giertz found out earlier this year that she’ll be undergoing 8 weeks of radiation following the removal of a brain tumor, but that hasn’t stopped her meteoric rise in popularity on YouTube. What’s next for Giertz might even include the first television show in space!

New mom finds her way back from brain tumor surgery with a little help from her millennial moms of color community

This is a heartwarming story about young D.C. public school teacher, Kassandra Johnson, who had just given birth to her second child when she started showing signs of a brain tumor. She was afraid she’d become a statistic. Instead, her community, organized around a group for millennial moms of color called District Motherhued, rallied to help. Moms who didn’t even know her donated baby supplies and supported her GoFundMe. Thanks to the support of her community and the success of her surgery, she hopes to return to her students this spring.

Entrepreneur builds on her experience recovering from tumor to launch VR-assisted medical device company

Rebecca Mandel was diagnosed with a brain tumor in her right frontal lobe when she was just 15 years old. Through the years that followed, she managed to graduate from high school and then college, even as she found it difficult to organize and communicate her thoughts. Her senior thesis required six months of writing eight hours each day. Rebecca found that meditation and, surprisingly, Virtual Reality headsets both helped her re-train her brain, and has since founded a company called Lucid Care to help other patients with cognitive impairment.

NASCAR rookie Matt Tifft overcame brain tumor to fulfill his dream

Matt Tiff is a NASCAR rookie that, just three years ago, began experiencing symptoms such as acute pain from artificial light, feelings of claustrophobia, and even heading strange voices in his head. This season he debuts as part of the Front Row Motorsports team driving car No. 36.

Maria Menounos making documentary about life post-brain tumor

Just one year after Emmy-winning journalist Maria Menounos found out that her mother had been diagnosed with glioblastoma, she was diagnosed with her own meningioma brain tumor. At this year’s SXSW she announced that she had begun work on a documentary about her journey through brain tumor treatment in her continuing efforts to dispel misconceptions and inspire others.

News Roundup – Mar 1, 2019

March 1, 2019 by Hayley Anthony

In the news this week: some promising pre-clinical treatments, hope for Medicare patients who want to try Optune, a recommendation research strategies, and a doctor’s story about how one brain tumor patient changed his how he saw patients.

Medicare CMS to hold hearings about paying for Optune on March 6

The federal agency that administers Medicare in the United States, the Center for Medicare and Medicaid Services (CMS) will consider whether they will pay for their patients to receive Optune treatment in the future. Optune is a medical device worn on the head that the FDA has approved as part of treatment plans for newly diagnosed and recurrent GBMs.

Supporters who think Medicare should cover Optune treatment can visit CMS’s Facebook livestream on March 6 and leave a comment.

Doctor shares his story of how an astrocytoma patient changed how he practices medicine

Writing in the Washington Post, oncologist Jalal Baig shares how he entered medicine with the common belief that doctors should keep themselves at an emotional distance from their patients. His view evolved as he treated an astrocytoma (and later GBM) patient he called “Mr. C.”

Of learning to cry over a patient, he writes in the Post, “Instead of diminishing me as a physician, I am left with a more nuanced perspective on life, a greater appreciation for medicine’s fallibilities and boundaries, and a renewed commitment to my patients.”

International panel names seven factors standing in the way of curing brain cancer

An international panel of clincians and laboratory scientists convened by Cancer Research UK published a joint statement in Nature about the factors that make brain tumors so difficult to treat, with seven key factors that need more research and funding to achieve a cure. These include topics from changing how trials are designed, to better leveraging neuroscience research on healthy brains, to gaining a better understanding of the so-called “tumor microenvironment,” or how tumors steal body resources to feed and support themselves.

Researchers discover a way to improve effectiveness of radiation

Researchers at the University of California, San Diego, have found that by blocking the activity of a particular protein found in glioblastomas, a tumor will respond better to radiation therapy. The tumor, known as PTEN, often acts in GBMs to repair tumor DNA that has been damaged by radiation, reversing the effectiveness of this treatment. In a recent study mouse, the scientists found that if they deactivated PTEN, then radiation killed more tumor cells and the mice survived longer. “

“These findings are novel and provide a foundation to move forward with a clinical trial,” one of the researchers was quoted as saying to the UCSD News Center.

Sharing the Journey

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