December 1, 2020

Dear Readers,

ASH 2020 is coming! The CLL Society has read all of the CLL abstracts, perused all of the posters, and we’re ready to be “on the scene” virtually interviewing the most credible sources, the investigators themselves! “Updates from ASH 2020” will be coming next week. Stay tuned.

CLL Meets COVID Vaccines/ Dr. Koffman’s take

There is promising news about COVID-19 vaccines, but does that news apply to those of us with CLL? The Moderna and Pfizer vaccines are made with a new technology that uses messenger or mRNA that teaches our cells to recognize SARS-CoV-2’s spike protein and thus prevent infection. The live Oxford/AstraZeneca vaccine is also a new type of vaccine, made from a virus that causes colds in chimpanzees and has been genetically modified not to replicate in humans and to carry into our immune cells the SARS-CoV-2’s spike protein that confers immunity. Dr. Koffman shares what we know, what we don’t know and next steps here. 

She took it with her! 

CLL Society’s Official COVID-19 Triage Statement

She took it with her! A patient called Dr. Brian Koffman on Sunday from an emergency room in Tucson to let us know that she had just used CLL Society’s Official Statement Concerning Prioritizing CLL Patients When Triaging Care During the COVID-19 Pandemic to avoid being discharged without a full assessment as she had been a few days earlier. She took it with her. You should, too! See the Official Statement here.

Conference Coverage 2019 Continued  

ASH 2019 – Does an inherited defect in the germline ATM tumor suppressor gene contribute to the development of CLL? Dr. Jennifer Brown found that one in four CLL patients studied had a variance (mutation) in their ATM gene. Learn more here.

Donate! 

Our Origin Story

Giving Tuesday reminds us to support those organizations that deliver what we value most. We hope that the CLL Society has earned your consideration. We are celebrating 10 Years of Covering ASH (and all the other major hematology conferences) with our 10 Years/ 10 Bucks Campaign. Like many, if not most, nonprofits, the CLL Society grew from a couple of people seeing a tremendous unmet need and taking action. 10 years ago, there was no treatment, short of a successful bone marrow transplant, shown to prolong life after diagnosis with CLL. 10 years ago, a college kid with a camera (Ben) a devastated wife (Patty) and a physician with an incurable disease (Brian) were pushed to the limit, but they had a GREAT idea: Show up at ASH 2011 and report what they learned. That took guts. ASH 2011 resulted in Dr. Brian Koffman meeting Dr. John Byrd, who “penciled him in” to one of the last available spots in a clinical trial for PCI-32765. PCI-32765 became ibrutinib. Ibrutinib saved Brian’s life. That great idea, to report the latest research from the most credible source (the investigators themselves) became the CLL Society! 10 years later, the CLL Society with its Expert Access™ FREE 2nd Opinion Program, Test Before Treat™ Program, multiple COVID-19 and many other Webinars, Patient Educational Forums, 38 CLL-Specific Support Groups across the country, plus the accumulated wisdom and expertise of its 35 member Medical Advisory Board still keep you in the know! CLL Society is invested in your long life! Please invest in the long life of the CLL Society. Please donate today. Thank you!

HOW YOU CAN POWER UP CLL SOCIETY! 

Cash, stocks, vehicles, artwork and many other things can add significant fuel to the CLL Society’s ability to educate all CLL patients to advocate for the best possible care for their CLL during these challenging times. See our donation page here.

Kansas! CLL Society’s New Address! Please note that the new address for sending donations and correspondence to CLL Society is PO Box 3197, Olathe, KS, 66063. Headquarters for the CLL Society remain in Claremont, CA but the Claremont, CA PO Box is no longer active.

CLL Society Upcoming Event: CLL Society and PeerView 

Join us on December 4, Drs. John Gribben, Ryan Jacobs, Allesandra Tedeschi, and Philip Thompson are scheduled panelists for a CLL Society and PeerView joint-sponsored pre-ASH 2020 event! An expert panel will present practice-changing evidence for the treatment of CLL with novel therapeutics and explore real-world patient case scenarios. Our broadcast will also feature perspectives on the patient’s experience of CLL therapy. Register here for this exciting activity to learn about important management updates and patient perspectives on the treatment of CLL.

NOW SHOWING: 3 REPLAYS

The Future of CAR-T Therapy: Can CAR-T Cure CLL? featuring Dr. Joe Fraietta. View here!

CLL Society 2020 Huntsman Virtual Patient Education Forum hosted by Dr. Deborah Stephens, with faculty from the Huntsman Cancer Center, Salt Lake City, Utah. View here!

CLL Society 2020 Global Virtual Patient & Caregiver Educational Forum featuring a top-notch CLL experts from across the country, with Dr. Brian Koffman as moderator. View here!

Donate!

Please support the CLL Society, the only CLL-specific, physician-curated public charity dedicated to meeting the unmet needs of CLL patients and their caregivers which holds the GuideStar Platinum Seal of Transparency.

Thank you and stay safe!

We are all in this together.

Patty Koffman
Co-Founder & Communications Director
CLL Society

CLL Society Support Group Meetings Coming Up!

CLL Society Support Group meetings have moved 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 your region. Once it is safe again, we will resume in-person meetings.

Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.