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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!
Your friend,
Seetha
_______________________________________________________________________________
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.
Contact Seetha:
Seetha.Modi@lls.org
(972) 996-5905
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