Dr. Brian Koffman serves on the international steering committee of CLL Advocates Network or CLLAN (https://www.clladvocates.net) that is an umbrella network that serves other nonprofits around the world, who like the CLL Society help those in their local countries whose lives have been impacted by CLL.
CLLAN is not patient facing but helps other advocates and charities in their work to help patients. He met in Barcelona, Spain with colleagues from UK, the Czech Republic, France, Italy, Canada, Ireland and Germany. As CLLAN has no staff, these are working meetings and Dr. Koffman’s homework includes building CLLAN’s working relationship with iwCLL, a group that serves CLLL doctors .
For more about CLLAN, read here.
Improving Quality Care for CLL Patients With ACCC
CLL Society is proud to be working with Association of Community Cancer Centers or ACCC on improving the quality of care for CLL patients in the community.
To read about our joint effort, please see https://www.onclive.com/sap-partner/cancer-centers/accc/accc-quality-improvement-workshops-address-the-need-for-improved-chronic-lymphocytic-leukemia-care
CLL Society partners with CURE magazine’s 12th Edition Cancer Guide
The CLL Society and Dr. Brian Koffman featured in USA Today
AJMC’s Third Most Watched Interview in 2019
Dr. Koffman Interview
Dr. Brian Koffman recently had the opportunity to participate in a webinar for media, Verastem Oncology and PI3K Inhibition: A Backgrounding Session, alongside his esteemed colleague and friend, John Pagel M.D., Ph.D., Chief of Hematologic Malignancies, Director of Hematopoietic Stem Cell Transplantation Program, Swedish Cancer Institute, and Verastem leadership, Dan Paterson, President and COO, and Jonathan Pachter, Ph.D., Chief Scientific Officer. Hosted by Verastem Oncology, the virtual session was intended to provide medical writers who are preparing for the American Society of Hematology (ASH) Annual Meeting with background on CLL/SLL, the patient experience and the treatment landscape, including PI3K inhibition.
Dr. Koffman had the opportunity to share his personal journey with CLL, as well as the below important key takeaways for patients living with CLL and their families:
- Build your team and include a CLL expert to help understand options/choices along the way.
- Like a chess game, think about more than just the next move as patients are living longer with CLL/SLL and may have multiple therapies.
- Find the right support and advice for yourself, be part of the decision-making process and be accepting of uncertainty.
Andrei Shustov, M.D., Recipient of 2nd Annual Innovation in Care Award
The CLL Society is very proud that our co-founder, Executive Vice- President and Chief Medical Officer, Dr. Brian Koffman was the inaugural winner of the Annual Innovation in Care Award from Verastem Oncology. This year’s winner, Andrei Shustov, M.D., is providing expert education and sponsoring research for those effected by T-cell leukemias and lymphomas. For more information, please see: https://www.businesswire.com/news/home/20191113005067/en/Verastem-Oncology-Announces-Andrei-Shustov-M.D.-Recipient
Terry Evans Interview
Our own director of the CLL Society Support Network, Terry Evans has been instrumental in helping establish and train facilitators for over 30 support CLL Society groups in Canada and the USA. CURE magazine wanted to hear his story. You can read the interview here.
Dr. Koffman’s Interview from EHA
At the EHA (European Hematology Assoc.) Annual Congress in Amsterdam in June of 2019, I was interviewed by EHA TV following my session on CAR-T therapy. I was asked about my experience as a patient/physician going through the therapy and about what advice I would give to a patient of mine considering that option. I also discussed the critical role of the caregiver. Please enjoy my 12 minute interview from EHA 2019.
Stay strong. We all in this together
Brian Kofffman MD
The CLL Society Collaborates with LLS and IWMF on Patient Registry
The CLL Society believes we need to understand the patient’s real world experience, so we collaborated with LLS and the International Waldenstrom Macroglobulinemia Foundation (IWMF) for a first of its kind patient registry to see what was happening to CLL and WM (Waldenstrom Macroglobulinemia) patients. Here is the interim report.
Dr. Koffman’s Italian Interview
Across the world there is much interest in CAR-T therapy. After his lecture at the European Hematology Assoc. (EHA) Annual Congress, Dr. Koffman was interviewed by an Italian reporter. The interview was done in English, translated to Italian, and we have a link to the slightly jumbled Google translation back to English. Reminds us of Mark Twain’s back translation of “The Celebrated Jumping Frog of Calaveras County.” Please enjoy either version of the interview and if you haven’t read it, Mark Twain’s humorous tale in English, then French, then back to English.
Expert Access Getting Wider Recognition
The CLL Society is proud that our innovative program, Expert Access that provides free expert second opinions to CLL patients, supported by a generous grant from Verastem Oncology and powered by Infinite MD is getting wider recognition. It is making a difference and saving lives.
Dr. Koffman Radio Interview
While in Dublin to speak for CLL Ireland on the occasion of their Annual CLL Information Day, Dr. Koffman was interviewed on the popular Irish radio show, FutureProof with Jonathan McCrea concerning his CAR-T experience.
We are also hoping to have links soon to the Italian newspaper and European Hematology Association (EHA) TV interviews about his presentation at EHA’s annual congress.
Physician Faculty at the CLL Society Educational Forum at UCSD, May 25, 2019
Drs. Koffman, Kipps and Choi
CLL Ireland National Information Day
If you are in Dublin on June 8, please join the great group at CLL IRELAND NATIONAL INFORMATION DAY. The event is even being announced on the radio in Dublin. You can listen to the public service announcement here:
In memoriam of Chris Dwyer
Christopher Harington Dwyer, a friend and CLL patient advocate passed on April 15 at his home in Ottawa, Ontario, Canada. He was 73. He will be missed big time, a giant among CLL advocates and a deep well of knowledge and hope for so many of us.
To read more about Chris and Dr. Koffman’s reflections, please see this memorial in CURE magazine.
Article by Dr. Koffman: How a New Cancer Therapy Saved My Life
Dr. Koffman’s op-ed article on how CAR-T therapy give him back his life, was posted on Inside Sources and other online news syndicates recently!
Interview with Brian Koffman at ASH 2018
Deb Simms is a fellow CLL patient, earlier trialist, and advocate for fellow CLLers around the world. Deb leverages her considerable chops as a news reporter to interview me at ASH 2018.
Interview with Dr. Matt Davids
Dr. Matt Davids of Dana Farber Cancer Institute and Harvard Medical School in Boston, MA was interviewed as one of the co-authors of our research presented at ASH 2018 for the Journal of Clinical Pathways (JCP). Read the interview.
Our poster, A U.S.-Based Survey: The Experiences of 1147 Chronic Lymphocytic Leukemia (CLL) Patients, is helping inform clinicians about how to best manage their CLL patients. Together we are making a positive difference. Thanks to all of you who have completed this survey.
Interview with Dr Brian Koffman: It Is Critical That Patients Educate Themselves and Leverage Their Advantages
Dr. Koffman briefly discusses the good and the bad (mostly good) about being a doctor dealing with his own CLL and how we should all leverage whatever advantages we have in this short interview from the American Journal of Managed Care .
Our research in the news!
MedPage is a widely popular and respected site for important medical news.
We are proud and pleased that they decided to include our research as one of the two CLL abstracts they highlighted from the huge ASCO (American Society of Clinical Oncology) 2018 Annual Meeting in Chicago.
What we are doing is making a difference in how CLL patients are treated. Thank you for your support in making it all possible.
Scroll down about ½ way to the Survey of CLL Patient Preference: (https://www.medpagetoday.com/reading-room/asco/hematologic-malignancies/77009) to find the reporting on our research.
Dr. Koffman is the first recipient of the Care Differently Award for Excellence in Patient Support and Education!
We’re very honored and pleased to see our own Dr. Brian Koffman recognized with this award.
Expert Access 2019 Renewal Announced!
We’re so excited to announce along with our partner InfiniteMD our 2019 plans for Expert Access!
CURE Media Group to Honoring CLL Heroes
At ASH 2018, Chris Dwyer, the late Lisa Minkove, Dr. John Byrd and myself are being celebrated as CURE 2018 CLL Heroes. I have to pinch myself sometimes to think where this CLL journey has taken me and the amazing people I have met along the way including all those being honored by CURE.
Expert Access featured in the News
We are so proud of our CLL Society Expert Access program ability to offer free expert to patients who would otherwise lack such care. The program is increasingly being recognized for the breakthrough in using the best best minds and the best tech to improve patient outcomes.
An Interview with Dr. Furman
Dr. Furman is know for his pioneering CLL research, his dogged insistence on getting the details right, and his generosity in answering so many CLL patients’ questions. We were therefore pleased to sees that he list the CLL Society as a go to source for quality up to date CLL Information.