Susie Novis is the President of the International Myeloma Foundation and started the IMF because her husband had MM. Pat Killingsworth, author and patient advocate and MM survivor, is a spokesman for Myeloma Patient Community. Kathy Giusti is the co founder of the Multiple Myeloma Research Foundation and has collected more than $195 million for research to improve survival and find the cure. And there are many more who serve the myeloma patient community every day.
I am also of the firm belief that being your own best advocate and educating yourself about this rare disease is one of the most important things you can do to insure a long life expectancy prognosis. Your education can take many avenues, and one of the best ways is to talk to the best multiple myeloma professionals in the world to obtain their views on the best treatments and care. This has been done very successfully by Cure Talk, who has provided a series called the Myeloma Cure Panel. You can find a list of all the Cure Panel programs at the link http://www.blogtalkradio.com/curepanel Other Doctor interviews can be found at the IMF and Patient Power.
Recently, I was contacted by a myeloma patient by the name of Jenny Ahistron, who was diagnosed with MM and wanted to help to expand the scope of my work with survival rates. In addition, she started a web site called mPatient.org, and wanted to interview and broadcast weekly a program focusing on myeloma treatment and research from multiple myeloma specialists. I had frankly thought that once a week was overly aggressive, but to my surprise she has been keeping up with this blinding schedule and put together some really great content. You can see her web site and listen to all of the broadcasts to date, and she has also provided a print copy of the broadcast if you would rather have some bedtime reading.
The broadcasts have so far included Dr. Robert Z. Orlowski, MD, PhD, M.D. Anderson Cancer Center, Dr. Guido Tricot, MD, PhD, Holden Cancer Center, University of Iowa, Dr. Don Benson, MD, PhD, The James Comprehensive Cancer Center, Ohio State University, Dr. C. Ola Landgren, MD, PhD, The National Cancer Institute, and Dr. Robert A. Kyle, MD, Mayo Clinic. You can listen to the rebroadcast of these excellent interviews at http://www.mpatient.org/
Jenny is quite impressive for three reasons. First because she is so passionate about providing helpful information to the myeloma patient community, she is also an exceptional interviewer, and she has been able to recruit an excellent schedule of myeloma professionals. I am so impressed with her work I have asked her to co-author a blog post on the best resources and ways to obtain the information we all need to obtain the best multiple myeloma life expectancy prognosis. This article will be published within the next two weeks.
And as always, may God Bless your Myeloma Journey/ Gary Petersen