May is an important month of firsts for me. My first Mother’s Day. My daughter’s first birthday. And, my first International Waldenstrom's Macroglobulinemia Foundation (IWMF) Educational Forum! Every year IWMF brings together the patient, caregiver, and support communities to learn about Waldenstrom’s. Presentations are given by thought leaders in research and clinical practice, but aimed at a lay audience. We were lucky enough to host this year’s Forum right here in Grapevine!
The day before the main Forum started, I attended a luncheon with support group leaders. As a Patient Access Manager, I support the medical, nonprofit, and survivor/caregiver communities. It was so interesting to talk to these leaders and learn from their experience. A good majority of those who have now assumed leadership positions in their community actually started in groups as patients or caregivers themselves. I love stories where people take challenging experiences and channel them into positive change for others. This group did not disappoint! They brought tears to my eyes and inspiration to my heart.
The next three days were the sessions. The speakers were clearly vetted well, because the caliber of these talks really blew me away. Seriously-check out this lineup: 2015 Ed Forum Agenda! I am going to tell you about my favorite two: Dr. Larry Anderson and Dr. Lee Greenberger. Hey, I never said I wasn’t biased! I made me proud to see these two LLS rock stars represent us so well.
LLS sponsored Dr. Anderson’s session: I Need Treatment – First Line Treatments & Side Effects on Friday. Dr. Anderson reviewed diagnosis, first-line treatment options, the benefits of each option, and potential side-effects to consider before deciding on which option is right for you. His case study method highlighted various presentations of the disease and how treatment options vary based on the diagnostic profile. The interactive session let the audience apply the information themselves and showed me the importance of empowering patients. These types of educational sessions go a long way in promoting patient/caregiver engagement and encouraging them to be their own advocates throughout treatment.
When he is not educating the masses, seeing patients, or juggling the 13 clinical trials he is involved in, Dr. Anderson also finds time to be an LLS advocate. This year, he is a Man of the Year candidate. A special thanks to Dr. Anderson for the many ways he supports our North Texas community!
On Sunday, Dr. Lee Greenberger talked about The Strategic Research Roadmap for WM. As our missions are so closely intertwined, LLS and IWMF have a long and rich partnership. This talk was no exception, and served as a precursor to the joint Road Map session for WM that LLS and IWMF will be holding in New York City on May 16th and 17th. I will provide a more detailed review of Dr. Greenberger’s presentation and some takeaways from this planning session in my next blog post. Stay tuned. . . more to come!
Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series. She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.