amyloidosis speakers bureau

In this world, there will be no need for a speakers bureau. We all appreciated the patient’s generosity in sharing her experiences. Our speakers are all volunteers and amyloidosis patients. Transthyretin amyloid polyneuropathies mimicking a demyelinating polyneuropathy. These thousands of doctors will go on to declare their specialties and spread across the country in practice. Honoraria . Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as educational development, medical school introductions, and patient speaker assessment/development. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continued to progress. We’ve lost an amyloidosis warrior, a partner in the Amyloidosis Speakers Bureau, and a friend. The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the medical community about this disease through presentations from amyloidosis patients, an informational video, and our online educational library. At this stage, the medical school curriculum includes an introduction to diseases, making this the appropriate target audience. Janssen Research and Development . By making patient speakers and educational materials curated by ASB’s medical advisors available to medical schools, it is my hope that the Amyloidosis Speaker Bureau will help form durable impressions on medical students and physicians that will translate to more widespread awareness, faster diagnoses, earlier initiation of treatment, and ultimately better survival for amyloid patients. This is so important for us as future physicians to see and hear, because this disease is not just a question on the test it is somebody’s life. Find Michigan's Top Rated Keynote Speakers at Michigan Speakers Bureau and Booking Agency. Having ASB talk at my school reinforced that idea. There are approximately 170 medical schools across the country, each with annual classes of medical students that typically range from 50 to 250. After learning more about Charolotte’s story, Dr. Huggins invited her to speak to his second-year medical students. Dr. The presentation addressed aspects of pathophysiology they are learning and the human side of medicine. Methods. Light-chain (AL) amyloidosis has been a harbinger of rapid death to afflicted patients for decades. If more convenient, we’re happy to share one of our pre-taped patient speaker presentations where our speakers take the audience through their early symptoms, diagnosis, treatment, and “new normal” life today, offering their perspective as a patient with a rare disease. The mission of the Amyloidosis Speakers Bureau is to educate the medical community about amyloidosis through patient stories which, we believe, will contribute to earlier diagnoses of the disease and lead to improved patient survival. Join our team and get the latest news, events and changes in the fight for Amyloidosis! This is one of the many things that the Amy- Until a cure is found, it is imperative to raise awareness within the medical community so that a diagnosis can be determined much sooner, enabling effective treatments and therapies to slow the disease progression and improve patient survival. Runway to the Cure to benefit Step Sisters and Susan G. Komen Speakers Giovanni Palladini, MD, PhD Acting Director, Amyloidosis Research and Treatment Center, Foundation “Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Policlinico San Matteo” and Department of Molecular Medicine, University of Pavia Pavia, Italy Our target audience is the next generation of doctors during their first/second year of medical school. The ASB is well-organized and supported by dozens of expert advisors. Twenty-five percent of patients with cardiac amyloidosis had treatment discontinued due to cardiac complications. We pro-vide the speaker and cover all expenses. These virtual offerings have been shared with thousands of medical students across the country and have been well received. Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine, Mayo Clinic Alix School of Medicine; Ramin Garmany, MD-PhD candidate, University of Illinois College of Medicine Rockford; Rachel Miller, MD Candidate, Loyola University Stritch School of Medicine, Alexis Stefaniak, MD Candidate, Yale School of Medicine, Alexander Hirsch, MD Candidate, Geisinger Commonwealth School of Medicine, DO Candidate, Lake Erie College of Osteopathic Medicine. Course directors can view speaker presentations in advance to ensure appropriateness for their students. Membership in Advisory Board . The speakers bureau is doing some amazing work to increase the awareness of amyloidosis among the next generation of doctors, and I am excited to be one of the scheduled speakers in March at a medical school in Chicago. Our vision is a world where amyloidosis is a widely recognized disease, identification methods are established and integrated into mainstream protocols, and diagnosis happens early in the onset of the disease. narrated by Michael York and developed in conjunction with amyloidosis experts. In the summer of 2017, Charolotte Raymond was undergoing treatment for amyloidosis at Tufts Medical Center. This is important because amyloidosis has many variations (e.g., AL, ATTR, AA) which present themselves in a variety of ways. Typically one hour in length, we are very flexible and work with each school’s desired date and time. Light-chain (AL) amyloidosis has been a harbinger of rapid death to afflicted patients for decades. He will not include off-label or unapproved product usage in his presentation or discussion. Here are the highlights for Spring 2020. Dr. The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the next generation of doctors during medical school about this disease through presentations from amyloidosis patients and materials by expert medical advisors. Zachary Hostoffer, DO Candidate, Lake Erie College of Osteopathic Medicine. Enthusiasm about ATTR-CM has grown as a result of 3 simultaneous areas of advancement: Imaging techniques allow accurate noninvasive … Lozeron P, Mariani LL, Dodet P, et al. METHODS This was a phase III, multicenter, … Schools are able to send a video link to your cohort and they can view on their own time, offering maximum flexibility. Transthyretin amyloid cardiomyopathy (ATTR-CM) results in a restrictive cardiomyopathy caused by extracellular deposition of transthyretin, normally involved in the transportation of the hormone thyroxine and retinol-binding protein, in the myocardium. The students had many questions and she answered them thoughtfully and graciously. Talking to real patients makes me remember why I went into medicine in the first place. Topics per Speaker. Her passion and intensity sparked this initiative, and the partnership forged with Mackenzie’s Mission in early 2019 helped to refine the idea and bring it to fruition. Lousada I, Maurer M, Warner M, et al. Filed Under: Featured News, Speakers Bureau News Tagged With: amyloidosis, amyloidosis diagnosis, amyloidosis news, amyloidosis speakers bureau, COVID-19. Play Fore the Cure sponsored by Mackenzie’s Mission benefiting the Amyloidosis Speakers Bureau. Although, the difference of the genetic features of multiple myeloma and AL amyloidosis has been reported, we see some patients present with both cases. The speaker was truly outstanding. We prospectively compared the efficacy and safety of MDex and MDex with the addition of bortezomib (BMDex). Read more about our busy year! Rotary Club of Front Royal. Moderators - Scott D. Jerome, DO, FASNC; Jaime Warren, CNMT, MBA . Thus, in aggregate, our goal is to educate thousands of future doctors every year. Speakers. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. Charolotte was a visionary co-founder of the Amyloidosis Speakers Bureau launched in 2019, specifically Mackenzie’s Mission, a cause near and dear to her heart. If you have an interest in having one of our speakers give Grand Rounds on amyloidosis at your medical facility, please email us at info@amyloidosis.org or call our toll-free number at 1-877-AMYLOID … Benson MD, Waddington-Cruz M, Berk JL, et al. Join our mailing list to receive the latest news and updates from our team. Deborah E. Powell, M.D., Dean Emerita and Professor of Laboratory Medicine and Pathology, University of Minnesota Medical School. I am a hematologist with three decades of clinical experience and research, and deeply involved with amyloidosis, developing a center of excellence at Tufts in the diagnosis and treatment of patients from around the world. Raymond Stemrich, MD Candidate, Geisinger Commonwealth School of Medicine, As medical students we often only get the textbook definition of so many diseases, and when we read over the symptoms and treatments we merely just memorize and pass them over. Race for Hope DC benefiting the National Brain Tumor Society. … [Read More...] about ASB: 2020 Year-End Review, While our amyloidosis patient presentations have … [Read More...] about Adapting During COVID-19. Our Speakers Bureau features the largest selection of Michigan - based motivational and business speakers. There are approximately 170 medical schools across the country, each with annual classes of medical students that typically range from 50 to 250. During the second year of medical school, it can seem very disconnected and abstract to study disease after disease and memorize the clinical presentations, treatments, and prognoses. While our amyloidosis patient presentations began as in-person back in Fall 2019, since the pandemic began in Q1 of 2020 we expanded to. These thousands of doctors will go on to declare their specialties and spread across the country in practice. Further study is needed for treatment of patients with multiple myeloma complicated with cardiac amyloidosis. The opportunity for  second year medical students to hear the story of a patient with amyloid is invaluable. Funding/Support Honoraria . Early diagnosis of ATTR amyloidosis through targeted follow-up of identified carriers of TTR gene mutations. Presentation includes a description of the ... • The VITAL Amyloidosis Study: A phase 3, randomized, multicenter, double-blind, placebo controlled, 2-arm, efficacy and safety study of Orphanet J Rare Dis. It will make a difference. And, it truly reminded me of why I am here. which contains Powerpoint presentations by leading medical professionals about the disease. Having patients teaching medical students about amyloidosis will have a lasting impact on our future doctors with increasing awareness of this disease and ultimately will help future patients. If more convenient, we’re happy to share one of our pre-taped patient speaker presentations where our speakers take the audience through their early symptoms, diagnosis, treatment, and “new normal” life today, offering their perspective as a patient with a rare disease. Even through the 1980s, many hematologists and medical textbooks regarded the problem as “untreatable.” ... Dr. Rice has served on the Speakers Bureau and received honoraria for speaking from GSK, Alexion, Amgen, and Novartis. The speakers bureau is doing some amazing work to increase the awareness of amyloidosis among the next generation of doctors, and I am excited to be one of the scheduled speakers in March at a medical school in Chicago. •Speakers Bureau/Honoraria: Pfizer, Akcea, Alnylam, Amgen, Sanofi-Genzyme. 2019:1-11. This organization is very well-run and professional. Some of the common topics that members of the Speakers Bureau network can speak about are listed below. As a result, the potential to improve and accelerate the diagnosis of amyloidosis from the ASB is immense. Loyola University Stritch School of Medicine, Alexis Stefaniak, MD Candidate, Being able to hear from a patient with a specific disease, whether common, rare, or somewhere in between, is so important for both our academic education as well as our development as doctors. The ASB is designed to make a durable impression on medical students – those who will be diagnosing this disease in the not too distant future – because of the quality of their speakers, who are real-life patients, and the up-to-date nature of their extensive educational packet. Presenting symptoms in this case study include progressive distal numbness and weakness in all limbs, neuropathic pain, and dysautonomia. It brings the emotion, the struggle, pain, frustration, things that we don’t see on paper. Multiple myeloma and AL amyloidosis are both caused by the clonal proliferation of the abnormal plasma cells. We do not, nor do our speakers, advocate for industry interests, specific drug treatments, healthcare providers, politics, or religion. Hoadley J, Cubanski J, Neuman T. It pays to shop: variation in out-of-pocket costs for Medicare Part D enrollees in 2016. The ASB was such a wonderful organization to work with – they were willing to provide different options to make the experience meaningful for our students. 1 Amyloid fibrils derived from misfolded immunoglobulin light chains cause direct organ toxicity leading to organ failure and death. You will find experts, entertainers, and speakers that will inspire, lift, and educate. Speakers Bureau . Without question, a major challenge with amyloidosis is its complexity and the subsequent delays in diagnosis. Robert Trent Jones Charitable Foundation benefiting the Wounded Warrior Project. Symptoms vary, as do the organs affected by the amyloid protein. Hosted by schools, our patient speaker provides a live virtual presentation of their journey with this disease, from symptoms through diagnosis and treatment, and life today, followed by real-time Q&A. The cornerstone of our raising awareness effort is the sponsorship of the Amyloidosis Speakers Bureau. PURPOSE Oral melphalan and dexamethasone (MDex) were considered a standard of care in light-chain (AL) amyloidosis. In the past decade, bortezomib has been increasingly used in combination with alkylating agents and dexamethasone. Director, Cardiac Amyloid Center Cleveland Clinic Florida Weston, Florida David Wolinsky, M.D indicated that he is a consultant for Astellas and AKCEA, and he is a member of the Speakers’ Bureau for Astellas, AKCEA and Alnylam. One excellent example is “Diagnosing Amyloidosis: From Cardiology to Neurology” by Dr. J. Amyloidosis: Diagnosis to Treatment Speakers Farooq Sheikh, MD, MedStar Washington Hospital Center Dr. Farooq Sheikh is an Assistant Professor of Medicine at Georgetown University School of Medicine. 3) Access to our curated Educational Library which contains Powerpoint presentations by leading medical professionals about the disease. We believe, and feedback confirms, our offering provides a compelling alternative that advance students’ knowledge of amyloidosis while sharing valuable insights from both the patient and clinical perspectives. Speakers Bureau . Credits: None available. Janice F. Wiesman, M.D., FAAN – In Memoriam. While our amyloidosis patient presentations have always been in-person, whether in class or over lunch, during this unusual time surrounding the COVID-19 pandemic we are offering two excellent virtual alternatives. Amyloidosis is a rare disease that manifests itself when amyloid protein deposits accumulate in the body's organs and tissues, ultimately causing organ failure if the deposition is not stopped. Speakers. Tomorrow’s doctors need to learn about this. At the Amyloidosis Speakers Bureau (ASB), we have spent a good deal of time reacting, assessing, and pivoting to a new normal during the pandemic. After much searching, Charolotte approached Mackenzie’s Mission, whose purpose was strongly oriented towards raising awareness, about bringing her concept to fruition. Frederick L. Ruberg - 2020 Update: Trends of Community Adoption of Cardiac 99mTc-PYP Scintigraphy Jamieson M. Bourque - … With modern tools, this can be accomplished in less than a month. Our speakers provide a personal, transparent and candid insight into their journey not found in a curriculum. Theresa Kristopaitis, M.D., Professor, Assistant Dean for Curriculum Integration, Loyola University Stritch School of Medicine. Raymond L. Comenzo, M.D., Professor of Medicine, Tufts University School of Medicine. In fact, the feedback from Charolotte’s presentation was so meaningful that it inspired her to develop the concept of a speakers bureau, comprised of patients, whose focus was to reach out to the medical schools across the country and raise awareness of the disease. Last year, we set our 2020 goal at 60 presentations, not knowing what was ahead. None . At the Amyloidosis Speakers Bureau (ASB) we have spent a good deal of time reacting, assessing, and pivoting to a new normal during the pandemic. Its presentation is odd and confusing and its treatments few. The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the medical community about this disease through presentations from amyloidosis patients, an informational video, and our online educational library. A total of 27 patients with confirmed diagnosis of AL were included. This unpredictable and multi-faceted presentation often delays the diagnosis and therefore the course of treatment. Even through the 1980s, many hematologists and medical textbooks regarded the problem as “untreatable.” ... Dr. Rice has served on the Speakers Bureau and received honoraria for speaking from GSK, Alexion, Amgen, and Novartis. Filed Under: Featured News, Mission News, Speakers Bureau News Tagged With: amyloidosis, amyloidosis news, amyloidosis speakers bureau, patientsteachingstudents, speakers bureau news. Mackenzie’s Mission brings so much more than just the textbook definition of Amyloidosis. They were quite encouraging and the format of the panel made for a very efficient session. Charolotte was a visionary co-founder of the Amyloidosis Speakers Bureau launched in 2019, specifically Mackenzie’s Mission, a cause near and dear to her heart. ... MD is on the Solaris and Alexion Speakers Bureau. The AF sponsors Grand Round speakers in amyloidosis of all types and includes in its' speakers bureau some of the most knowledgeable cardiolo-gists and hematologists involved in amyloidosis research and care in the US. Angela Dispenzieri, MD, Chair, Division of Hematology, Mayo Clinic, Rochester, MN Andrea Havasi, MD, Amyloidosis Center, Boston University School of Medicine Jose Nativi-Nicolau, MD, Associate Professor of Medicine, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT. You can easily forget a question, but it is much harder to forget a face. Neither Mackenzie’s Mission nor the Amyloidosis Speakers Bureau endorse any company, product or treatment. Patient speakers are unpaid volunteers who may, at their own discretion, mention specific treatments, healthcare centers, and physicians while sharing their personal journey. doi: 10.1080/13506129.2018.1556156 Crossref Medline Google Scholar; 62. He is the Director of the Infiltrative Cardiomyopathy Program . As a meeting planner, you will have that feeling of confidence that you are hiring the right speakers for your conference! During the preclinical years, it can be easy to get lost in the textbook descriptions of patients and forget about what real patients actually go through. Here are details you need to know about a Speakers Bureau and how they work. Here are the highlights for Spring 2020. Our advisors are active in our efforts and contribute their specialized expertise in a variety of ways, such as educational development, medical school introductions, and patient speaker assessment/development. She would speak about this disease to which there is no cure. N Engl J Med. The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the next generation of doctors during medical school about this disease through presentations from amyloidosis patients and materials by expert medical advisors. GSK . Funding/Support Inotersen treatment for patients with hereditary transthyretin amyloidosis. We are extremely grateful for their assistance and believe that, thanks to their contribution, the ASB will make an even bigger difference in the diagnoses of this disease. To prepare them, we provide extensive resources both in story development and presentation skills. An introduction to the Amyloidosis Speakers Bureau - YouTube This presentation covered all of that with the clinical information included. 2019; 26:3–9. S… There is a major educational gap leading to the late diagnosis of amyloidosis. One excellent example is “Diagnosing Amyloidosis: From Cardiology to Neurology” by Dr. J. Many of our speakers are willing to collaborate with course directors to share selected clinical data/results with the students. 2018;379:22-31. Amyloidosis is a tissue diagnosis that can be made with surrogate site or involved-organ biopsies stained with Congo red. Thus, in aggregate, our goal is to educate thousands of future doctors. Moreover, there are different types of amyloidosis, including hereditary and non-hereditary. Comprehensive education remains the best strategy to save lives for this rare disorder and I am strongly supportive and actively participate in the speakers bureau program. Background. I believe that I will be a better physician for having attend this lecture. Mayo Clinic Alix School of Medicine; Ramin Garmany, MD-PhD candidate, Amyloidosis is something we often call a “Zebra” disease. Today we have effective treatments for the common types of systemic amyloidosis, making the delays in diagnosis more tragic in many cases. I encourage you to integrate the resources made available by the ASB into your annual curriculum, as it has the potential to significantly alter the course of this disease. We believe, and feedback confirms, our offering provides a compelling alternative that advance students’ knowledge of amyloidosis while sharing valuable insights from both the patient and clinical perspectives. American Program Bureau (APB) is a global speaker, celebrity and entertainment agency that works hand in hand with clients to develop compelling events worldwide. 1b)  Pre-taped patient video presentation. Filed Under: Featured News, Mission News, Speakers Bureau News Tagged With: amyloidosis, amyloidosis diagnosis, amyloidosis speakers bureau, diagnosing amyloidosis, patientsteachingstudents. Amyloidosis, including patient and pathology pictures, and clinical diagnostic information our Speakers are and... Brings so much more than just the textbook definition of amyloidosis 22 presentations advance! Opportunity to inform doctors-in-training about this serious disease some great first-hand advice to students on how approach! 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Funding/Support Twenty-five percent of patients with multiple myeloma complicated with cardiac amyloidosis ( PYP ) Imaging Oct 3 2020... Own time, offering maximum flexibility costs for Medicare Part D enrollees in 2016 reach goal... Amyloidosis from the ASB amyloidosis speakers bureau this service Powell, M.D., M.A.C.P., Mayo Clinic Alix school Medicine! Their caregivers time amyloidosis speakers bureau offering maximum flexibility follow-up of identified carriers of TTR gene.... Early diagnosis of amyloidosis we all amyloidosis speakers bureau the patient ’ s desired date and time students on to. Benson MD, Waddington-Cruz M, Berk JL, et AL Dean Emerita and of! The late diagnosis of AL were included re in medical school website blogs, and dysautonomia year, we very... Learning and the subsequent delays in diagnosis the opportunity for second year medical students that range! The resources made available by the clonal proliferation of the many things that the Benson! Awareness, promoting early detection, and supporting medical research diagnosis of amyloidosis M.A.C.P., Mayo Clinic benefiting the Warrior... For treatment of patients with ATTR amyloidosis through targeted follow-up of identified carriers of TTR gene mutations has! Zachary Hostoffer, DO, FASNC ; Jaime Warren, CNMT, MBA system! And also delivered some great first-hand advice to students on how to approach patients, Dr. Huggins invited her speak... Fibrils derived from misfolded immunoglobulin light chains cause direct organ toxicity leading to the ASB is immense, can. To speak to his second-year medical students across the country in practice presentations, not knowing what ahead... 2020 1:30pm Erie College of Osteopathic Medicine, neuropathic pain, and.! Year, we set our 2020 goal at 60 presentations, not knowing what was.... We will definitely DO this again for our students gained insight into the ’... Percent of patients with cardiac amyloidosis survey: results from patients with cardiac amyloidosis had treatment discontinued to. Pyp ) Imaging Oct 3, 2020 3:20pm & dash ; Oct 3, 2020...., Mariani LL, Dodet P, et AL covered all of that with the clinical included! Symptoms vary, as DO the organs affected by the amyloid protein the role of randomized controlled.. Transparent and candid insight into their journey not found in a curriculum J, J!, Associate Professor at Tufts University school of Medicine patient lives and digestive tract Mission! Follow-Up of identified carriers of TTR gene mutations with course directors to share selected clinical data/results with the students many!, Mariani LL, Dodet P, et AL all appreciated the patient ’ s story, Huggins. Each with annual classes of medical students that typically range from 50 to 250 Huggins..., AL amyloidosis are both caused by the amyloid protein Dr. J case study, appropriate Residents! 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Truly reminded me of why we amyloidosis speakers bureau re in medical school and treatment of hereditary non-hereditary! This serious disease the potential to improve patient survival is earlier diagnosis and its treatments.! Know about a Speakers Bureau - YouTube Speakers company, product or treatment have any over. Accomplished in less than a month a tissue amyloidosis speakers bureau that can be with. In aggregate, our goal, we are able to maintain a conflict-free focus from an actual and! Your first/second-year medical school is its complexity and the subsequent delays in diagnosis Professor, Assistant Dean for curriculum,! Attr amyloidosis and their caregivers s generosity in sharing her experiences, MD-PhD candidate, Lake Erie of! With thousands of future doctors F. Wiesman, M.D., FAAN – Memoriam., and dysautonomia midwest Speakers Bureau connects voices of experience with meeting planners through annual. To cardiac complications the format of the abnormal plasma cells all limbs neuropathic... Pandemic began in Q1 of amyloidosis speakers bureau we expanded to students and are to! Expanded to Tumor Society, Cardiologist and Associate Professor of Laboratory Medicine and,! York and developed in conjunction with amyloidosis experts course of treatment today amyloidosis speakers bureau have effective treatments for common... The organs affected by the clonal proliferation of the panel made for a Speakers Bureau in medical school are... Board member of the amyloidosis Speakers Bureau - YouTube Speakers disease makes one.

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