Saturday, December 29, 2018

Reflections on year of both great progress and great sadness in the CLL world

Happy New Year.
This year we lost 3 members of our local Orange County CLL Society support group, and I lost other 3 other dear CLL and CAR-T friends that I met on my personal journey.
So sad. My heart still aches. CLL is still a killer. We all know too many tragedies and too many close calls and too many living in fear.
We at the nonprofit CLL Society have ambitions to change that through targeted research as funding for CLL studies is starting to dry up. It’s largely seen as a solved problem. That is a tragic joke that we will work with LLS, others and our fellow CLL survivor to help correct. Stay tuned. We are working with top researchers to be smart about how to marshal our limited resources
Today our biggest push remains to ensure that everyone gets their best possible care by getting smart about their CLL. That is what blogs such as this do.
If you haven’t already, please check out on website. Last week’s newsletter is chock full of helpful info for any CLL patient or caregiver at any point of their journey.
On Feb. 9 we will hold our first of the year post- ASH educational forum at City of Hope and will live stream it. Registration is now open. 10 more forums will follow across the country.
The news in 2019 overall has been good with amazing progress, but it is not good enough and not everyone gets the benefits of all the progress.
Let’s dedicated ourselves to working together. One of our motto for 2019 will be no patient left behind. And of course: Smart patients get smart care.
Stay strong. We are all in this together.
Brian
Website: www.cllsociety.org

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