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Dear Friends and Supporters of the CLL Society,
New this week!
Our COVID-19 Updates page has a wealth of timely information for the general population and that specific to CLL. Start with Dr. Byrd’s advice for CLL patients , then take a look at Bloodwise’s video on COVID-19 and blood cancer , Tom Henry on drug shortages , the great opinion piece written by another immune suppressed cancer patient, When you say coronavirus will only kill the vulnerable, you’re talking about me , Dr. Koffman’s thoughts on the same topic in We are All in This Together , and more. Right now we are updating daily or more often.
At ASH 2019, Dr. Allan shared results from the first-in-human trial of vecabrutinib , a new drug which researchers hope will be effective for patients who have developed resistance to ibrutinib and acalabrutinib.
Dr. Koffman is quoted in this cool basic background infographic published in USA Today.
Caregivers! I want to hear from you!
Too often we caregivers are “the invisible people” in a patient’s journey, and yet we are “the vital link” in addressing the challenges. As a caregiver myself, I am reaching out to you with the deepest empathy. I know that your life was interrupted. I know that you have had to learn a whole new vocabulary. I know that you have had to deal with terrifying uncertainties. I know that you have continually been responsible for “righting the ship” in adverse circumstances. I know that no matter how full a life you had before, CLL demands to be the center of your personal universe now. I know that you are deeply committed. I know that you have had to reach deeply into yourself to resurrect forgotten skills, or to develop new ones. You are probably more competent than you think.
Currently you are invisible to me, but I need to hear from you now. Who are you? Where are you? What are you thinking? Do you have a brief comment or reflection for me? Do you have suggestions? Do you know of great caregiver resources I should be aware of? Do you have a full story you would like us to publish? I keep all conversations confidential. The CLL Society is completely willing to publish stories with the author left anonymous.
The Caregivers Special Edition of the CLL Tribune will be published in 2020.
Your input will be the vital link here, too.
Please send me an email at firstname.lastname@example.org with “I am a caregiver” in the title to get the conversation rolling.
A million thanks!
Patricia Koffman, Executive Director
CLL Society Inc.
P.O. Box 1390
Claremont, CA 91711
Patient and Caregiver Educational Forum Updates
The following live events have been postponed due to the threat of coronavirus.
Louisville, KY – The Patient Educational Forum scheduled for April 25 with Norton Cancer Institute is postponed.
Minneapolis, MN – The Patient Educational Forum scheduled for April 25 with Mayo Clinic is postponed.
Phoenix, AZ – The Patient Educational Forum scheduled for April 25 with Mayo Clinic is postponed.
Boston, MA – The Patient Educational Forum scheduled for May 2 with Dana-Farber Cancer Institute is postponed.
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 . Pick up a free bright red Test Before Treat™ reminder bracelet at our 2020 Patient Educational Forums. Tell us how testing before treatment, or lack thereof, influenced your CLL management at email@example.com .
Our CLL Experts Will See You Online!
Would you like a second look at your CLL? A generous grant funds our Expert Access Program, allowing you to see a world-renowned CLL physician- at no cost- for a second opinion, using our easy online platform . This program is open to all U.S. patients with a CLL diagnosis, and you are welcome to apply here. If you have used the program before, you may reapply if you need new clinical advice.
CLL Society Support Group Meetings Coming Up!
We have been diligently monitoring the evolving issues related to the coronavirus (COVID-19). Out of an abundance of caution, CLL Society is cancelling all Support Group meetings for the month of March . We are assessing the situation daily and looking at all options, including virtual meetings, so thanks for your understanding and flexibility in this rapidly changing situation.
Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.
Lymphoma Research Foundation Meetings
(POSTPONED) Wednesday, March 18, 2020 from 6:30 PM – 8:30 PM in Dallas, TX
The Lymphoma Research Foundation invites you to attend a FREE program: Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options at the DoubleTree by Hilton Hotel Dallas Near the Galleria featuring Farrukh T. Awan, MD from University of Texas Southwestern Medical Center. Find out more information here.
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.
Saturday, March 28, 2020 from 9:30 AM – 12:30 PM CDT
Patient Power invites you to hear from chronic lymphocytic leukemia experts and patients. Find out more information and register here .