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Our dear friend Anne was diagnosed with a form of cancer most commonly found in children, medulloblastoma. Let that sink in for a moment: diagnosed with a kid’s cancer as an adult. The rallying cry for brain cancer awareness has become “Gray Matters” and this diagnosis was truly a deeply gray area. The support and funding dedicated to pediatric cancers is not designed to support adults with pediatric cancer.

This gray area creates many barriers to accessing new treatments, including emerging clinical trials, or finding financial assistance to obtain existing treatments. Our friend Anne was blessed with family and friends who were able to lend assistance whenever and wherever possible to make sure that she could access these life-extending treatments. Unfortunately, we know that this kind of support may not be a reality for other folks fighting in the gray.

“The incidence of adult medulloblastomas is approximately 0.5 per million per year, and decreases with increasing age.”

https://www.ncbi.nlm.nih.gov/books/NBK12737/

This could mean a lot of different things, but our hope is to write grants for qualified individuals, to help support them in their battle with pediatric brain cancer. Maybe that looks like a $1,000 to pay for travel expenses to get to a clinical trial. Maybe that looks like $500 to cover hotel stays during a bout of radiation therapy out of town. Maybe that looks like $2,000 to give you and your family an opportunity to travel somewhere warm when the bitter cold of treatments has rattled your bones.                              

“In adults (patients ≥ 16 years of age), medulloblastomas are much less common, accounting for < 1% of all adult brain tumors.”

https://www.ncbi.nlm.nih.gov/books/NBK12737/

2020

2nd: Walela Nehanda

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Meet Walela. Yesterday, in honor of Anne's birthday, we were blessed to be able to support Walela with a grant to support them as they navigate life with advanced stage leukemia in the midst of global pandemic. . . Read more about Walela below and follow them at @itswalela to support their essential transformative justice work. . . Walela, thanks for allowing us to be a small part of your big story. . . . Walela Nehanda is a 26 year old Black queer disabled and trans non binary femme organizer & writer based in South Central, Los Angeles. In 2017, they were diagnosed with advanced stage leukemia and are currently awaiting a life saving bone marrow transplant. Walela's first hand experience with medical racism and ableism prompted them to study and analyze the ways in which our movements for liberation can do better when it comes to including Disability Justice. They are one of the co-founders of Spit Justice – a Black grassroots collective based in South Central consisting of working class, queer, trans/gender non conforming organizers. Walela has been featured in publications like Nylon Magazine, Teen Vogue, The Guardian Vice i-D, and more. They have performed and given workshops across the country on topics such as: accessibility, ableism, disability justice, medical apartheid, Black resistance throughout the diaspora, and transformative justice. . . . #ThrivingOn #ForAnneForAlways #ResistAndPersist #GriefAndJoy #SeekJustice

A post shared by Thriving On (@thrivingonasinglerayofsun) on Jun 21, 2020 at 4:37am PDT