Amy has lived with MS for more than twenty years and is now bringing that experience, as well as her great sense of humor and sharp mind, to a new nonproft, MS Softserve. MS Softserve is a customizable, interactive online learning environment for people trying to make sense of their MS in a way that's empowering to the user. MS Software received the first grant ever awarded by the National MS Society. It makes sense that Amy should want to build MS Softserve, as she works as a consultant and guest speaker to help healthcare professionals better understand the patient experience and to be a stronger link in the patient-to-doctor communications chain that is health literacy. Amy has worked tirelessly with pharmaceutical companies, physician organizations, nurse educators to find ways to improve the lives of patients with MS. She's also the lively and likeable host of the radio program, MSLOL (Multiple Sclerosis Life of Learning) Radio and companion to the Two MS Chicks Radio program (now known as MS Chick and Ms. Diagnosed).
Deanna is a radio deejay by trade and a formal pharmaceutical salesperson, but she is also the amiable other half of the wonderful MS Chick and Ms. Diagnosed radio program with Amy Gurowitz. Deanna also teams up with Stuart Schlossman for the information, cutting edge radio program, MS Views & News. Both programs are part of a larger MS education media effort, MS Unplugged. She is also the chief administrator for the excellent Facebook group, MS Unplugged. Her story is a bit unique: she has lived with and treated her multiple sclerosis for several years until, in 2013, she was "undiagnosed" with MS and given a new diagnosis, Transverse Myelitis, which is a very rare autoimmune condition with many of the same symptoms as MS. Like Amy, Deanna's is a cheerful voice on the air and she works diligently to discuss the day in and day out experiences of living with a chronic, disabling medical condition in a way that helps others to understand their "new normals" and to do so with a measure of positive energy and a sense of humor.
Stuart Schlossman || MS Views & News and MSUnplugged
Stuart's work appeals to the journalist in me! He runs the highly informative radio program, MS Views & News, where he interviews all kinds of doctors and experts about specific issues related to MS, with Deanna Kirkpatrick as his sidekick. Stu's is a major nonprofit multimedia effort, which includes the MSBlog, a major website hub, a weekly newsletter and a YouTube page. Stuart was diagnosed with MS fifteen years ago, his efforts to develop these useful, informative educational media programs came after he was unable to locate the kinds of resources he needed on the internet. He also serves as a patient advocate for the pharmaceutical company, Biogen Idec, which produces several of the major DMTs for MS: Tysabri, Avonex, Rituxan and Tecfidera. Perhaps the greatest favor he does for the MS community is to ask the hard questions and to challenge or expose "snake oil salesmen" as well as those who would spread misinformation and build false hopes in the millions of patients with MS.Personal note: You can have a bazillion organizations out there like the National Multiple Sclerosis Society and the Multiple Sclerosis of America, and they can jam their websites chock full of information, and they can be really good at this, but their websites are still voiceless and faceless... great for looking up information, but not great for getting the full human experience that these three MS superheroes provide with their tireless voluntary efforts.
We live in a great world when we see people like Amy, Deanna and Stu come forward with their passion, their skill sets and their willingness to put themselves out there in the combat zone for the rest of us to learn from. I have learned more about MS and the experience of having MS from these three than from all the books, magazines and organization websites out there COMBINED. My hat is off to all of them, as well as to the emerging new armies of bloggers, speakers and video artists who are inspired by the efforts of these three to bring real human experience to the conversation. Without these people, I would just feel like a helpless victim, but because of them, I aspire to do more, to be more and to take better care of myself.
