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Dear OurBrainBank supporter,
As we enter Thanksgiving week, I write to bring you up to date on our work and to ask for your help.
This is the first full year for us without the vision of my wife, Jessica Morris, who founded OurBrainBank after being diagnosed with glioblastoma, the deadliest brain tumor. Jessica was a powerhouse and “urgency” was her key word. To turn GBM from terminal to treatable is an urgent mission; we need to harness the power of patients and their loved ones to work in unison with researchers.
The first time I ever heard the word “glioblastoma” was when the surgeon came out of Jessica's six-hour operation. Two days earlier, she had collapsed in the Catskills and was rushed to a local hospital. I was waiting alone, desperate for news. Eventually, the surgeon appeared, “It went very well,” he told me and my heart soared. “It’s almost certainly glioblastoma, but don’t worry, several of my patients are still alive a year after I operated on them.”
Welcome to my new world. Jessica would be lucky to be alive in a year’s time. It was like being sucked down into a cold, black sea and everything going dark.
Jessica lived more than five years. And in that time she created OurBrainBank, which grew into an international powerhouse with the mission to support families and speed up the search for new treatments so others aren't slammed with the shock that hit us.
Our achievements in 2022
We're working with world-class researchers at Harvard to collect more and better data, building on our pilot study.
We've re-conceived our soon-to-be launched website as a root for patient power. We see the need for more information and support — especially at the point of diagnosis, when people find themselves thrown into a terrifying and confusing new world.
Our ambitions for 2023
- Build our community with the new OurBrainBank.org and help people feel empowered and supported
- Fuel cutting-edge research with neuroscientists at Harvard University to expand our data collection effort and enhance understanding of the disease and its impact on families
- Launch advocacy campaigns to make our groundbreaking GBM Bill of Rights a reality
- Connect different healthcare systems and approaches and expand our international reach
So much to do
There is still much to do. GBM remains a cruel and brutal disease that receives insufficient attention and resources. Together, we can begin to make a difference.
Thank you for your help. This giving season, I ask you to dig deep again: with your generosity, we'll supercharge the progress we've made with Jessica’s sense of urgency to support people living with GBM and push for new treatments that will offer all of us hope.
Thank you and happy holidays!
Ed Pilkington
Chair, OurBrainBank
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