June 16, 2020

Dear Readers,

In these uncertain times, learning how to best protect ourselves from contracting COVID-19 remains paramount. Please register, send in questions and attend our June 18 COVID-19 Virtual Community Meeting: Managing Re-Entry for the latest on this dynamic situation.

COVID-19 Virtual Community Meeting: Managing Re-Entry

Join our CLL experts Drs. Mazyar Shadman and Deborah Stephens, 2 Infectious Disease specialists, Drs. Kimberly Hanson and Joshua Hill, Laboratory Scientist Dr. Susan Leclair, and moderator Dr. Brian Koffman as they answer your questions about Managing Re-Entry on Thursday, June 18, 2020 at 11:00 AM PT / 12:00 PM MT/ 1:00 PM CT/ 2:00 PM ET. Learn more and register here.

On an encouraging note, there have been positive signs that BTK (Bruton’s tyrosine kinase) inhibitors ibrutinib and acalabrutinib are helpful in mitigating the severity of inflammatory response in COVID-19 patients in the general population. Click here for an introduction to this and a link to the research. All this will be discussed during OUR COVID-19 Virtual Community Meeting: Managing Re-Entry on Thursday, June 18.

ASH 2019 Conference Coverage 

Dr. Deborah Stephens from the Huntsman Cancer Institute in Salt Lake City discusses research on a 3rd generation BTK inhibitor, ARQ 531 that binds differently and may be effective when ibrutinib or acalabrutinib are no longer working. Dr. Stephens will be one of our faculty for the June 18th COVID 19 Virtual Community Meeting: Managing Re-Entry.

Pure joy, in praise of CAR-T!

This week we share with you the testimonial story of Dan & Jodi Symes in praise of CAR-T. Dan’s Large B-Cell lymphoma failed to respond to 2 rounds of chemotherapy and a stem cell transplant, prompting his physician to speculate that he had only a couple of months to live. Like many of us faced with the challenge of a catastrophic illness and a terrible prognosis, Dan had abandoned a big dream. CAR-T therapy gave Dan his life back… and his big dream!

The CLL Society agrees with Dan & Jodi that insurers need to recognize the value of and provide coverage for this life-saving treatment for blood cancer patients.

On all fronts, the CLL Society is working to advocate, educate, and research what is needed to gain best outcomes for our CLL patients…. because we like happy endings!

Planned Giving

Donations to the CLL Society help us to provide critical support and credible, cutting-edge treatment information to CLL patients and their caregivers. Becoming a legacy donor can provide immediate or deferred tax benefits to you and your family, while providing the CLL Society with vital resources. If you are interested in learning more about planned giving to the CLL Society, please reach out to support@cllsociety.org to schedule an informational call.

Funds Available – Team Rubicon

This bears repeating: In case you missed this announcement, the CLL Society would like to share with you details of the COVID-19 Emergency Food Assistance Program. Patients with an identified financial need can apply for a one-time grant of $500 to help pay for food and other nutritional items. Additional potential benefits include delivery of food and other critical supplies directly to your place of residence by one of Team Rubicon’s (mostly military veteran) volunteers. https://teamrubiconusa.org/applynow/ 

Stay safe.

Stay connected.

The CLL Society is here to help!

Patty

Patricia Koffman
Co-Founder & Communications Director
CLL Society, Inc.

 

 

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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 – June 16 @ 7:00 pm

Montreal CLL/SLL Support Group – June 17 @ 6:00 pm

Portland CLL Support Group – June 17 @ 6:00 pm

Milwaukee CLL Support Group – June 18 @ 6:00 pm

Twin Cities CLL Support Group – June 18 @ 7:00 pm

New Jersey CLL Patient Support Group – June 18 @ 7:00 pm

Western North Carolina CLL Patient Support Group – June 20 @ 10:00 am

City of Hope CLL Support Group – June 20 @ 10:00 am

Central Florida CLL Support Group – June 20 @ 10:30 am

West LA CLL Support Group – June 20 @ 11:00 am

Oberlin, OH, CLL Patient Support Group – June 20 @ 1:00 pm 

Washington DC-area CLL Patient Support Group – June 20 @ 3:00 pm

San Francisco area CLL Patient Support Group – June 21 @ 4:00 pm

Northeast Ohio CLL Patient Support Group – June 23 @ 7:00 pm

New Orleans and Surrounding Areas CLL Support Group – June 24 @ 6:30 pm

Rochester NY CLL Support Group – June 24 @ 7:00 pm

Seattle and All Points North CLL Support Group – June 25 @ 6:00 pm

Denver CLL Patient Support Group – June 25 @ 6:30 pm

Nashville CLL Patient Support Group – June 27 @ 12:00 pm

Boston CLL Patient Support Group – June 27 @ 1:00 pm

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