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Help me keep thriving on my clinical trial

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I was diagnosed over 5 years ago with a rare brainstem glioma, a week before my 32nd birthday. After a year of chemo and radiation, I had no options left. That is, until I found out about the ONC201 trial . I originally had to travel to Seattle to get the drug, but that site was shut down due to funding issues, at which point I was able to 'transfer' to LA at Providence Saint John's Health Center. It has been a real blessing for me, as I only have to take a quick 1 hour flight to get there, especially because I have 2 young children (1 & 3) and it is hard to travel and be away from them. It has been 4 years now on the trial and I actually have tumor regression, which is unheard of in my case! I will continue to be on this drug, presumably, for the rest of my life-and it is all thanks to Providence Saint John's Health Center and their ONC201 trial. I truly believe that without it I would not be alive.

So I was approached by my oncologist who basically informed me that they were running into the same financial issues that the Seattle site had. Bottom line, they have funding for the next year, but that's it. The trial is in phase 3 and they are hoping for FDA approval in 2ish years. So I am raising money to keep the trial site open until then and allow me to continue traveling to LA to receive treatment. I will be taking the funds collected and donating them directly to the trial site. I deeply appreciate anything you can give.

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    Organizer

    Benjamin Stein-Lobovits
    Organizer
    Oakland, CA

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