Blood Cancer Awareness Month: Awareness Alone Is Not Enough
This month (September) is Blood Cancer Awareness Month. It’s pretty personal for me since I have lived with chronic lymphocytic leukemia (CLL) since 1996. When I was diagnosed it was difficult to find the information I needed, and that was one of the key reasons I founded Patient Power.
This month (September) is Blood Cancer Awareness Month. It’s pretty personal for me since I have lived with chronic lymphocytic leukemia (CLL) since 1996. When I was diagnosed it was difficult to find the information I needed, and that was one of the key reasons I founded Patient Power. Along the way I have met and worked with some incredible fellow “blood buddies” who are living with conditions such as lymphoma, myeloma, chronic myelogenous leukemia (CML), myelofibrosis and more. Many are not only “powerful patients” but are also powerful patient advocates who have founded, run or contribute to leading organizations that today support hundreds of thousands of patients around the globe. Much of that support is online, and there are also in-person gatherings that result in great content that is now shared with an even bigger audience through the power of the Internet. It is remarkable to see the progress that has been made in just a few years and rewarding to be a contributor.
Here’s one example. In Chicago a major conference is being held on Sept. 15, World Lymphoma Awareness Day. Some 200 patients will attend On the Road to Cure in person and a global audience will attend via the Internet. A driving force behind this is Scott Seaman, a lymphoma survivor and founder of the Chicago Blood Cancer Foundation, a Patient Power partner, along with Hope for Lymphoma and Rush University. One of the speakers is Betsy de Parry, a 10-year survivor, author, patient advocate and recent participant in a national television series on cancer survivorship. There’s an impressive line-up of physicians , including many doctors we’ve interviewed for Patient Power such as Steven Schuster from The University of Pennsylvania, Brad Kahl, from the University of Wisconsin, and Mattias Rummel from Germany. If you are dealing with NHL or Follicular Lymphoma, this is an important event for you.
A few days later on Sept. 20, also in Chicago, our friends at the MPN Research Foundation will hold the Midwest MPN Patient Symposium, a breakthrough educational event for people with myeloproliferative neoplasms such as primary myelofibrosis or polythemia vera. Here, again, there is positive news to report and world experts on hand. We interviewed Dr. Reuben Mesa from the Mayo Clinic in Scottsdale in advance of this event.
That weekend an event that would not have even been possible to hold just a few years ago will take place as patients who are now living with chronic myelogenous leukemia (CML), a blood cancer previously terminal for most patients, will be gathering in person and online to participate in a six-hour live Virtual CML Patient Summit on Sept. 22, which is CML Awareness Day. Greg Stephens, founder of Patient Power partner, The National CML Society will lead sessions, along with powerful patient advocates such as NBA legend Kareem Abdul-Jabbar who was diagnosed with CML in 2008 and e-patient advocate Pat Elliott. The “Living Well with CML” Summit will focus on the decades of life that are now ahead for these patients thanks to new treatments and sessions including an in-studio cooking demonstration will provide tips to improve health and quality of life.
But wait, there’s even more….there’s a big myeloma town meeting that I am hosting on Sept. 29 in Columbus, Ohio on the campus of The Ohio State University. This is the first of two patient events with our partner, the Multiple Myeloma Opportunities in Research and Education (MMORE). You can hear the excitement as things improve for this disease in my interviews with Dr. Craig Hofmeister, Dr. Sagar Lonial, and patient-advocate Cheryl Boyce.
These are very encouraging times for those living with blood cancers – there are more opportunities than ever before for patients to connect with each other for shared knowledge and support. I love the fact that Patient Power can connect you with leading experts and inspiring patients on our website and I also love that so many people can now harness the power of the Internet to bring more and more empowerment opportunities to my “blood buddies.” I know first-hand that “awareness” alone isn’t enough. It is the collective “actions” of those who make up blood cancer patient communities that will help all of us become more “powerful patients.”
Wishing you and your family the best of health!
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