April 6, 2021

Dear Readers,

Let’s take a deep dive into CLL Society’s first edition of the 2021 Tribune!

Driving CARs to the Clinic for Standard Medical Management of CLL

CAR-T therapy has positioned itself as a proven therapy but has not yet been approved for CLL. You can get the inside scoop now! Take a closer look with Dr. Joe Fraietta, Director of the Center for Advanced Cellular Therapies (CACT) at the University of Pennsylvania), who has developed novel approaches for the treatment of cancer through the genetic modification of T lymphocytes. His work contributed to the initiation of multiple clinical trials which led to FDA approval of the first CAR-T cellular therapy. As you read this article, you may find yourself awestruck and inspired by CAR-T’s mechanism of action and Dr. Fraietta’s vision of having “off-the-shelf” CAR-T therapy in the future. His special write-up for the first 2021 edition of the CLL Society Tribune can be found here.

CLL Happens to Real People! 

In Rare Always Finds Me by John Hayler, he shares a remarkable story of coincidences that is a must-read for anyone with an interest in CLL or baseball!

Also well worth the read is A Patient Story by an anonymous writer who keeps Watch & Wait in the background, sees a doctor regularly, has developed a personalized anti-cancer diet and lifestyle, and refuses to give CLL a seat at the table.

What Are You Doing on April 21st?

How about joining the CLL Society’s CAR-T Ed Forum: The Basic Science and Latest Data? Respected by colleagues for their leadership in quality clinical trials, and much beloved by their patients for the extraordinary clinical care they provide, Drs. John Pagel and Tanya Siddiqi head up CLL Society’s next Ed Forum. Dr. Larry Salzman, a physician and CLL patient who has received CAR-T, will also be sharing his real-life experience alongside his wife Sharon, who will share the caregiver perspective.

In Case You Missed It

The March 26th COVID-19 Virtual Community Meeting: Contagion, Variants, and Vaccines has been saved just for you! Click here to view our on-demand recording featuring CLL experts Drs. Steve Rosen and Alexey Danilov, infectious disease physician Dr. Sanjeet Dadwal, lab scientist Dr. Susan Leclair, and CLL Society’s own Dr. Brian Koffman presenting the most up-to-date COVID-19 information. We have also provided a transcript of audience questions and answers for this event.

Survey: How Do You Make Treatment Decisions?

There are a variety of ways in which CLL patients make decisions when considering the various treatment options. How did you make your decisions? Let us know here.

Other Upcoming Events

CLL Society and CancerCare are presenting a workshop called Current Perspectives on the Treatment of CLLon Thursday, April 8th from 1:30 – 2:30 PM (ET). Patty Koffman, CLL Society’s Communications Director, joins CLL experts Drs. Jennifer Brown and Mazyar Shadman to discuss the importance of testing before determining first-line CLL treatment options, as well as the need to re-test before the 2nd and 3rd lines of treatment. Additionally, they will cover telemedicine appointments and how to prepare a list of questions beforehand. Find information about this and other upcoming events here.

Join NCCN for the webinar Know What Your Doctors Know: Chronic Lymphocytic Leukemia on April 21st and April 26th, featuring Dr. Jennifer Brown and CLL Society’s Dr. Brian Koffman. Learn more here.

Financial Resources 

The LLS Susan Lang Pre CAR T-cell Therapy Travel Assistance program is available to CLL patients with significant financial need. The fund provides financial assistance to patients diagnosed with blood cancer who are being evaluated to receive CAR T-cell therapy within a clinical trial. You can find out about this program and other forms of financial assistance on our website here.

Please Support CLL Society

CLL Society is 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.

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.