A note of Thanks from the Support Group meeting in VA/DC – 4/1/2017

Speaking to a sold-out crowd of over 100 registrations, double our usual size, Dr. Steven Treon, Director of the Bing Center for Waldenström’s Macroglobulinemia, Dana-Farber Cancer Institute/Harvard Medical School reported on the Bing Center’s latest advances in clinical and laboratory research. The presentation was cosponsored with the International Waldenström’s Macroglobulinemia Foundation Support Group for Northern Virginia/Washington, DC/Western Maryland on Saturday, April 1, 2017.


Dr. Treon and Christopher Patterson, Administrative Director of the Bing Center, generously initiated this event and reached out to patients in the Washington, D.C. area. Motivated patients and care-givers enthusiastically came from Virginia, Washington, DC, Maryland, Delaware, North Carolina, and California to learn up-to-the-minute news about progress at the Bing Center.

Dr. Treon reviewed discoveries using whole genome sequencing, including the Bing Center’s pivotal discovery of MYD88, the one in three billion DNA molecules which has a mutation expressed in 95% of WM patients and other key, disease-specific mutations. Also, novel therapeutics for Waldenström’s patients and a hopeful increase in survival prospects through findings from current clinical trials were discussed.

Individual patients raised well-informed questions which Dr. Treon thoroughly addressed, creating an expanded learning experience for all in attendance. Following the program, he kindly entertained one-on-one questions for patients with special medical concerns, as well. He provided crucial data to those who might not otherwise have access to such cutting-edge information about our rare disease.

Christopher Patterson, Academic Director of the Treon Lab, is a devoted international patient Advocate, and engaged with all of us through his compassionate, front-runner support of WM patients.

Chris also provided several of the most recent articles authored by Dr. Treon and his Bing Center Laboratory team in the Journal of Clinical Oncology as downloaded by Harvard Conway Library of Medicine. In addition, publications written by Dr. Treon in cooperation with his international WM colleagues were offered from such journals as Blood, the British Journal of Haematology, and the National Comprehensive Cancer Network. All were truly welcome and highly regarded.

With a lively, standing ovation, our audience expressed its deep gratitude for this tremendous opportunity to hear from Dr. Treon, one of our foremost global leaders in Waldenström’s research and treatment and to connect with his colleague, internationally-known patient educator, Christopher Patterson.

Thank you emails poured in to me, IWMF support group leader, within a few hours of the close of the program. We were all thrilled with this exceptional experience which offered great hope for our futures. And, look forward to their return to us next year with news of their ever-evolving, state-of-the-art advancements in Waldenström’s Macroglobulinemia! The most inspiring and unforgettable thing as a patient, I have ever heard Dr. Treon say is, “In our search for a cure, we won’t settle for anything less!”

Lu Kleppinger
IWMF Support Group Leader
Northern Virginia /Washington, D.C./Western Maryland