May 26, 2020
Webinar Next Week for the Newly Diagnosed:
Please join us for a CLL Society Webinar, Just Diagnosed: What Do I Need to Know? on Tuesday, April 28, 2020 at 10 AM PT / 11 AM MT/ 12 PM CT/ 1 PM ET. Drs. Neil Kay and Brian Koffman offer critical information and answer your questions covering the time period from newly diagnosed to first treatment. Please see additional information and register here.
Dear Readers.
COVID-19 3 Question Survey
How are you doing in quarantine?
Are you anxious? Analytical?
Or in between?
We ask you directly and don’t try to guess
Trusting, as always, you know yourself best.
Tell us!
Take the 3 Question Survey.
Thanks.
Dr. Neil Kay of the Mayo Clinic/ Rochester MN has brought decades of critical clinical trial investigation and compassionate care to CLL patients. We thank him for his contributions to the above, as well as to the following:
In This Week’s Alert:
Please watch Dr. Brian Koffman’s 2019 ASH interview in which Dr. Neil Kay reinforces the idea that the course of CLL is influenced not only by the tumor, but also by the “micro-environment” in which it lives inside the bone marrow. Investigations into understanding this micro-environment may ultimately lead us to better control of the disease. Watch here.
Dr. Koffman explains the excitement about the possible role of two CLL drugs, ibrutinib and acalabrutinib, to treat COVID-19. Read here.
Meanwhile, did you know that the CLL Society’s 30 + CLL-specific Support Groups are transitioning to robust online Zoom meetings? Contact your local Support Group leader here to learn how to join in.
Your fellow CLLers are waiting for you!
Stay safe.
Stay connected.
We are all in this together.
Patricia Koffman, Co-founder and Communications Director
CLL Society
COVID-19 Virtual Committee Meeting Now Posted
If you missed the COVID-19 Virtual Community Meeting on April 17, you can still watch the recorded event here.
CLL Treatment Decision Tool
The CLL Society worked with Clinical Care Options to put together some helpful patient materials including this basic CLL treatment decision tool to get you thinking about what options to discuss with your doctors.
Patient and Caregiver Educational Forum Updates
All Patient and Caregiver Educational Forums have been postponed due to the threat of coronavirus.
Visit our website for the most up-to-date information on all CLL Society Patient and Caregiver Educational Forums.
Test Before Treat™
Stories from our readers highlight the importance of proper prognostic testing. Read here. Request a free bright red Test Before Treat™ reminder bracelet. Tell us how testing before treatment, or lack thereof, influenced your CLL management at support@cllsociety.org.
CLL Society Support Group Meetings Coming Up!
CLL Society Support Group meetings are moving to a virtual platform for most locations due to the threat of coronavirus. Support group members will receive an invitation to register for the meeting from the support group facilitator. If you are new to the group, please contact the RSVP email for the Support Group in the link to the specific location below. Once it is safe again, we will resume in-person meetings.
Chicago CLL Support Group – April 21 @ 7:00 pm
Rochester NY CLL Support Group – April 22 @ 7:00 pm
Nashville CLL Patient Support Group – April 25 @ 12:00 pm
Boston CLL Patient Support Group – April 25 @ 1:00 pm
Northeast Ohio CLL Patient Support Group – April 28 @ 7:00 pm
New Orleans and Surrounding Areas CLL Support Group – April 29 @ 6:30 pm
Denver CLL Patient Support Group – April 30 @ 6:30 pm
San Diego CLL Society Support and Education Meeting – May 6 @ 4:00 pm
Long Island CLL Support Group – May 7 @ 6:45 pm
Houston-area CLL Support Group – May 9 @ 10:00 am
Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.
Virtual Events
April 30, 2020 from 4:00 – 5:00 PM EDT
Join CancerCare Connect® Education Workshop Series for people living with chronic lymphocytic leukemia, their families, partners, caregivers, friends and health care professionals. Patricia Koffman, Co-founder and Communications Director of CLL Society will be speaking, along with featuring Drs. Jennifer R. Brown and Mazyar Shadman, and Social Worker Carolyn Messner. Listen to this workshop over the telephone or connect to our webcasts online. Find out more information and register here.
Lymphoma Research Foundation Meetings
Please be advised that all of their Ask the Doctor programs have been postponed due to the threat of coronavirus. Visit the LRF site for more information.
The Leukemia & Lymphoma Society Meetings
Please be advised that all of their Living Well with CLL programs have been postponed through May 15th. Visit LLS.org for more information.
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