Dear Readers,
Prepare to be amazed in one week! CLL Society Webinar “The Future of CAR-T Therapy: Can CAR-T Cure CLL?”
This informative webinar, featuring Dr. Joe Fraietta, is right around the corner! Be sure to join us on Tuesday, November 17. While CAR-T therapy is not yet FDA approved for use in CLL, there are many clinical trials available to participate in. If you were to have CAR-T therapy in the future, a living drug would be made from your own t-cells, which would be re-engineered to recognize surface markers on your cancerous b-cells, and they would carry genetic programming designed to destroy those bad guys! As part of the team led by Dr. Carl June at U. Penn, Dr. Joe Fraietta’s translational research has taken CAR-T from an exciting possibility to a lifesaving “living drug”. Don’t miss this walk through the cellular wonderland with a true pioneer in CAR-T research and gain the opportunity to learn about the latest. Register here.
Dr. Fraietta loves questions!
Fascinated, curious, mystified, apprehensive, or want to know something very specific about the inner workings of CAR-T? Good! Put your CAR-T questions in the running to be answered during our Nov. 17 CAR-T Webinar by emailing support@cllsociety.org with the subject line: CAR-T Question.
Take it with you! CLL Society’s Official COVID-19 Triage Statement
This letter to your healthcare provider may help you be attended to faster, should you have any COVID-19 symptoms. CLL Society has authored an Official Statement to help you help your healthcare providers understand CLL patients’ unique vulnerabilities to COVID-19 and our higher risks of serious complications. COVID-19 concerns are topline in medical offices these days and the demands for care can overwhelm some medical facilities, so triaging who gets attention becomes a necessity. Fax, email, or otherwise draw your provider’s attention to this letter.
Instant Replay!
Enjoy the archived version of our Saturday, October 10 Global Virtual Patient Education Forum “THE BIG EVENT” – CLL patients are living longer! CLL treatments are better than ever. Let us help you front-load your knowledge. Don’t get the wrong treatment! Develop a strong strategy. Build a great healthcare team to support the best care for your CLL. Learn from these outstanding CLL experts: Drs. John Byrd, Matt Davids, Joe Flynn, Joe Fraietta, Ryan Jacobs, Neil Kay, Jose Leis, Anthony Mato, Sameer Parikh, Lindsey Roeker, and Adrian Wiestner. Moderated by Dr. Brian Koffman. You will also find answers to commonly asked audience questions. Please note, due to technical difficulties during broadcast, Dr. Neil Kay’s session had to be omitted, but in its place we offer a link to Dr. Kay’s ever-popular “Just Diagnosed: What Do I Need to Know?” CLL Society webinar, which will certainly help you get your bearings if you are newly diagnosed. See the entire 10/10 archive here!
Conference Coverage ASH 2019
In this ASH 2019 interview with Dr. Brian Koffman, Dr. Deborah Stephens discusses her clinical trial combining Selinexor with ibrutinib for patients who have become refractory to ibrutinib. Selinexor blocks BTK using an entirely new mechanism of action. Used in combination with ibrutinib, it keeps tumor suppressor proteins active by blocking their ability to exit the center of the cell. Learn more here.
Huntsman Virtual Patient Education Forum
CLL Society Virtual Patient & Caregiver Education Forum with Huntsman Cancer Institute is on Saturday, November 14 at 10 AM – 12 PM MT. In both her research and her clinical practice, Dr. Deborah Stephens is known to be particularly sensitive to the issues that are of importance to patients during their CLL journey. Dr. Stephens and her team at the Huntsman partner with the CLL Society again this year to host a joint effort to cover the basics of CLL diagnosis, early management, clinical trials, treatment options and patient perspectives. Dr. Brian Koffman will present one of his favorite subjects, inspiring you to advocate for the best possible care for your CLL. Join Drs. Koffman and Stephens, and other Huntsman healthcare providers for a day of learning and sharing of local CLL resources. Learn more and register here!
Veterans, Thank You for Your Service
In appreciation of our military veterans’ service to our country, we provide this link to a very informative CLL Society Webinar, featuring Dr. Ed Ratner, Associate Director of the Minneapolis VA Geriatrics Research Education Clinical Center and Bruce Wright, CLL Society Senior Support Group Advisor, as they engage in a helpful discussion to aid veterans in advocating for the best possible care from the VA for their CLL. Topics include the recommendation to enlist the aid of a veteran service officer, explanation of “presumptive illness lists”, especially related to Agent Orange and other toxic exposures, CLL drugs available from the VA, VBA benefits, a discussion of service connection disability compensation, other service-connected disabilities, including hearing loss, plus a reminder to have your service record include toxic exposures data, etc. Bruce is a longtime member of the CLL Society Patient Advisory Board and one of the original CLL Society Senior Support Group Advisors who helped establish and support several CLL Society Support Groups across the country. Bruce has personally helped over 70 veterans with service-related disabilities obtain the benefits that they have earned and deserve. We offer this webinar with gratitude to our veterans.
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.