As I write this, I am sick—pretty high fever the other night, chills, yucky cough. I should have known! Remember that nice older lady I was talking to at the apartment complex cocktail party a few days ago? Remember how she was coughing? She did her best to cover her cold, but I stood right there. Now, coughing just like she did and suffering with other symptoms, now after two trips to the pharmacy and one to the doctor, now after a chest X-ray, blood test and nose swab—I should have known! Is it impolite to step away? As a...

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“If you want to challenge a process, you need to understand what the process is,” says Jan Geissler, EUPATI Director. “When patients don’t understand the process, they might delay the process by suggesting things that may not be feasible. It might frustrate people on the development side.” (Source: Nature) The European Patients' Academy on Therapeutic Innovation (EUPATI) Expert Training Course is an exciting and unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The Course will run for 15 months, at the end of which participants who have successfully completed its six modules will be awarded...

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Lung cancer patient Pam Griffith It hit me again the other day as I hosted a lung cancer event in Tampa, Florida. If we get sick, aren’t we lucky if medical science—just then—has something new, either approved or in a promising clinical trial, that can help us get well? Floridian Pam Griffith was dying from advanced lung cancer. Standard drugs weren’t working, and the tumors were obvious in several places in her body. With some effort, she was fortunate to enter a clinical trial for a new kind of medicine, a “checkpoint inhibitor” that allows her immune system to not be...

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My cancer diagnosis was the toughest challenge I’ve ever encountered in my life. I knew about cancer, had friends and loved ones who lost their lives to cancer, but never in a million years did I think it would happen to me. So, obviously, I wasn’t prepared. Why would I be? People don’t study cancer in preparation of receiving a diagnosis someday. None of us ever think it will happen to us, because cancer is something that happens to other people, right? Wrong! Approximately 41 percent of men and women in America will be diagnosed with cancer in their lifetime....

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Ya hace años que las asociaciones de pacientes se movilizan para tener voz en el sistema sanitario, aunque los cambios son lentos y puede decirse que aún falta algún tiempo para que estén en el centro del sistema. El inquieto Jan Geissler (@jangeissler) -en la foto- curado hoy de una leucemia mieloide crónica que le diagnosticaron en el 2001, ha entendido a lo largo de varios años de activismo por los derechos de los pacientes que es esencial que los pacientes formen parte activa del diseño de los medicamentos.  Jan Geissler, fundador de EUPATI. Con este objetivo fundó recientemente EUPATI...

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Powerful Patients at a 2014 event at Moffitt Cancer Center I have written many times here about my frustration when groups that are supposed to have a devotion to cancer patients as their top priority get sidetracked by egos, distrust of one another, bureaucratic procedures and turf wars. Over the years, I have seen it happen much too often. But I am happy to report some instances now when groups are working together as true partners, and I want to call them out for credit. Over the next weeks and months, Patient Power has plans to produce a number of...

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At 26, they told me I had an MPN and to take a pill. So I took it. At 29, they told me I had a different MPN and to take another pill. So I took it. At 38, I listened to what they had to say. And then I researched, I questioned, I consulted, I paid attention to my labs, my symptoms, my daily ups and downs, and I researched some more before I decided with them how to manage my health. “They,” of course, are the knowledgeable MPN specialists wearing crisp white coats.   Like many MPN patients, I’ve...

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Andrew with Dick and Carole Crew near Seattle just before Dick’s stem cell transplant in Summer 2014 Just two weeks ago, I wrote of losing an old television colleague to liver cancer. From diagnosis to death was less than two months. Today I am writing about the death this past weekend of another old friend and mentor, Dick Crew, who fought diffuse large B-cell lymphoma for about a year. While I have been so fortunate to live with two chronic blood cancers, my friends' versions of malignancies took them much too quickly and with conditions where we have made less...

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Joel Blank By Carol Preston I lost the dearest of friends last month. For those of you connected with the life sciences, you may know the name Joel Blank, a Yale-educated PhD who helped develop and win FDA approval for MRI, magnetic resonance imaging. Joel also co-founded five start-up companies. But Joel’s true passion was his family: Paula, his wife of 52 years, daughters Stephanie (Jay Musoff) and Carolyn (David) Morris, and most especially his four grandchildren—Madeleine, Charlie, Gracie and Will. Joel poured his heart and soul into loving his family and creating memories. Will the rest of us do...

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Dando la cara. Así es como Pere Mogas, a quien le diagnosticaron un mieloma (un tipo de cáncer de la médula ósea) hace tres años y medio, afronta la enfermedad. Pere es uno del centenar de pacientes y familiares que participaron en la Jornada para Pacientes de Mieloma Múltiple que Patient Power organizó en octubre en el Hospital Vall d'Hebron de Barcelona. Casi cuatro meses después hemos hablado con él y con otros pacientes que estuvieron en la jornada para saber cómo les va. "Me dió mucha fuerza la jornada. Desgraciadamente, muchos pacientes tenemos una gran ignorancia respecto de la enfermedad". Pere...

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