The first one in the new year will be led by Dr. Michael Keating, CLL expert at MD Anderson Cancer Center and in Houston on February 1, 2014. You are welcome to register right now. There will be a second CLL event in Tampa on April 12, 2014. Other events are being planned for people with MPNs (myeloproliferative neoplasms) and, if we can secure the funding, for multiple myeloma. In addition, we plan to kick off monthly “Ask the Expert” programs on the Internet and a regular flow of brief “Ask the Expert” video responses to questions you have sent in. Our goal is to foster an ongoing conversation between you, the patient or caregiver, with leading experts and inspiring, experienced patient-advocates – a true community dialogue.
As you know, our philosophy at Patient Power is that each of us as patients wants to be more in control of our journey as we fight a serious illness. In my own case, I have TWO leukemias (CLL and myelofibrosis) and for me, information has made a huge difference in the quality of my care. I am sure you agree, we don’t want to be talked AT, we want to be an active participant in decisions that affect us. We want to understand the issues, the treatments, the consequences. Our communication approach is dedicated to helping make that happen. This, of course, is not just a dialogue between you and the experts. We often welcome you giving feedback to us. How can we improve, what do you want to know more about, and from which people?
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Now you may be asking, where does the money come from for our team to do this? Thankfully, we’ve been getting education grants and sponsorships either to us or non-profit partners. With the landscape of treatment and research changing fast in areas we cover major cancer centers and pharmaceutical companies are recognizing they can do the right thing by supporting a stepped up flow of information and dialogue. But you, Patient Power, and the dedicated experts remain in control.
In 2014 in the conditions we cover in our in-depth health centers, and in some others we may add, there is, fortunately, a great deal to talk about that can help patients get better care and lead longer, fuller lives. Not all the answers are known, but we as a community are seeking answers together. We will celebrate that with more active two-way communication about the latest research, treatments, how to live better, and connecting you with resources. Thanks, in advance for being part of it, sharing what we do with friends, family and even your doctor, and please be sure to be signed up for alerts on our website so we can keep you informed of what’s new.
Here’s wishing you and your family a happy new year and, of course, the very best of health!
