Join us to learn effective ways to communicate with your healthcare team. Discover how to clearly share your symptoms, ask questions, and understand your treatment options. This session aims to empower you with the tools to be an active participant in your healthcare journey.

Edelyn (Ed) Yhip, RN, BSN, is the Supervisor of Intake Nurse Navigation for Enterprise New Patient Services at City of Hope. Specializing in leukemia, lymphoma, myeloma, gene therapy, and pediatrics, Edelyn leads a nationwide, remote team of specialized nurse navigators. As the first clinical connection for patients, she guides her team with deep expertise and compassion, partnering with onsite physicians to ensure a seamless, urgent transition into specialty care and building trust from day one.

Held monthly for newly diagnosed ATTR amyloidosis patients. This is designed as a one-time starter session to help recently diagnosed ATTR patients understand the basics, process what’s happening, and plan next steps. We cover vocabulary, symptoms, treatment categories, and questions for your doctors, plus community resources.

Stacey Goodman, MD completed her hematology training at the NIH and Vanderbilt University before joining the faculty in 1993. She helped create and lead the Vanderbilt Amyloidosis Multidisciplinary Program (VAMP) until her retirement in 2021. She currently serves as a member of the board of directors at the Amyloidosis Foundation.

Held monthly for newly diagnosed ATTR amyloidosis patients. This is designed as a one-time starter session to help recently diagnosed ATTR patients understand the basics, process what’s happening, and plan next steps. We cover vocabulary, symptoms, treatment categories, and questions for your doctors, plus community resources.

David Gusick is the founder of Somebody To Talk To, a program bringing patients, caregivers, and doctors together for free weekly sessions. With 30+ years in systems architecture and entrepreneurship, he is building a global support model to improve quality of life for rare disease patients.

Join us for an enlightening session with Dr. Tibor Kovacsovics, who will discuss the important role of upfront autologous stem cell transplantation in treating primary AL amyloidosis. Learn how this treatment can impact patient outcomes, what to expect during the process, and how it fits into the overall management of the disease. This session is designed to help patients and caregivers understand advanced treatment options and make informed decisions about their health care.

Dr. Tibor Kovacsovics is Chief of Hematology and Medical Director of Leukemia at City of Hope Cancer Center Phoenix. A hematologist-oncologist with 20 years of clinical research experience, he specialises in AML, ALL, stem cell transplantation, and amyloidosis. He trained at Harvard Medical School/MGH/Brigham and Women's, co-founded the Utah Amyloidosis Program at Huntsman Cancer Institute, and has served as principal investigator on dozens of landmark hematology studies.

Hope is often viewed as something we either have or don't have, but research suggests it is a skill that can be developed. This session explores the science of hope, including how agency and the ability to find multiple paths forward can help us navigate uncertainty, overcome setbacks, and create a more meaningful future.

Hamide Eygoren, MAPP is a positive psychology expert, educator, and resilience coach dedicated to helping people thrive through life's challenges. Drawing on the science of well-being, resilience, and human flourishing, she teaches practical strategies for finding meaning, cultivating hope, and building emotional strength. Her work empowers individuals facing adversity, including those living with chronic illness, to navigate uncertainty while creating lives of purpose and connection.

Progress comes from steady habits, not heroic weeks. Learn how top patients build consistency, recover from setbacks, and keep improving over time. We will create a weekly check in, a small goals system, and a reset plan. Leave with a long game routine you can sustain. Includes a reset plan for bad weeks so you bounce back faster.

Julia E. Carlson, RD, LDN, is a registered dietitian with experience in gastrointestinal health, medical nutrition therapy, and eating disorders. She serves the Vanderbilt IBD Clinic, Functional Medicine Clinic, and multidisciplinary amyloidosis team. She trained at Vanderbilt University Medical Center and uses evidence-based practice to support overall health and quality of life.

Join us for a compassionate and informative session with Dr. Horst, who will discuss the gastrointestinal symptoms commonly experienced by those with Amyloidosis. Learn about the causes of these symptoms and explore various treatment options that can help manage and alleviate discomfort. This session aims to empower you with knowledge and practical advice, enhancing your quality of life while living with Amyloidosis.

Sara Horst, MD, MPH, FACG, AGAF, is Professor of Medicine in Gastroenterology, Hepatology, and Nutrition. While her broader expertise includes inflammatory bowel disease (IBD), she joined VAMP to focus on how amyloidosis affects the gastrointestinal tract, with expertise in its diagnosis, symptoms, and treatment. Her work also uses digital health and outcomes research to improve patient care.

Living with a rare disease can feel isolating, but you do not have to face it alone. Learn simple ways to find understanding people, strengthen relationships, and build a caring support system for daily life with a rare disease.

Clinical Psychologist, Director of Crushing Doubt Membership, Author of Crushing Doubt (available on Amazon), ATNS Board Member

Learn how to prepare for a clinic visit, organize questions, track symptoms, and bring the right medical information. This session helps patients and care partners make appointments more productive, understand what to ask the care team, and leave with clearer next steps for treatment, follow-up, medication changes, tests, and ongoing communication.

Tracy Allen, RN, BSN, OCN, is a Vanderbilt University Medical Center nurse with more than 25 years at Vanderbilt, largely in hematology / oncology. She focuses on plasma cell disorders and amyloidosis care, and has created patient education on chemotherapy protocols and led a clinic quality project to streamline Darzalex Faspro observation times.

Join us for a supportive and informative session where we'll explore how neurologists can determine if peripheral neuropathy is caused by amyloidosis, and discuss the most effective symptom management strategies. We'll cover various medications that can help manage symptoms without altering amyloid levels, and delve into how physical and occupational therapy can play a crucial role in maintaining mobility and improving quality of life. Whether you're newly diagnosed or navigating ongoing treatment, this session aims to empower you with knowledge and support.

Anthony J. Langone, MD MS is a nephrologist and transplant specialist focused on kidney and pancreas transplantation, amyloidosis, and multiple myeloma. He supports patients with renal involvement in amyloidosis and brings research experience in medication side effects, biomarkers, transplant care, and kidney protection strategies.

Living with a rare disease can feel heavy at times. This session will help you recognize when sadness may be depression, understand common signs, and learn how to reach out for support. You are not alone, and help is available.

Kelly R. Fields, LMSW, is a medical social worker with 38 years of experience, including 25 years at Vanderbilt. Spending 23 years in the stem cell transplant and hematology clinic, she co-facilitated vital amyloidosis and myeloma support groups, dedicating her career to empowering patients through complex, life-changing treatments.

Learn how to navigate a complex care system with multiple subspecialty providers, appointments, tests, and follow-up needs. This session helps patients and care partners understand care-team roles, prepare questions, track recommendations, keep communication organized, and make care feel clearer, coordinated, manageable, and less overwhelming.

Adrienne Molteni, RN III, has 25 years of oncology and hematology experience, specializing in cancer infusion and clinical nursing at Vanderbilt-Ingram Cancer Center. An Amyloidosis Foundation board member since 2018, she utilizes her specialized clinical background to coordinate Nashville-area patient support groups.

Held monthly for newly diagnosed ATTR amyloidosis patients. This is designed as a one-time starter session to help recently diagnosed ATTR patients understand the basics, process what’s happening, and plan next steps. We cover vocabulary, symptoms, treatment categories, and questions for your doctors, plus community resources.

Stacey Goodman, MD completed her hematology training at the NIH and Vanderbilt University before joining the faculty in 1993. She helped create and lead the Vanderbilt Amyloidosis Multidisciplinary Program (VAMP) until her retirement in 2021. She currently serves as a member of the board of directors at the Amyloidosis Foundation.

Join us for an informative session where we'll clarify the role of cardiac biopsies in diagnosing Amyloidosis-CM. We'll discuss why this procedure is sometimes necessary, how it helps in making an accurate diagnosis, and reassure you about its safety when performed at specialized centers of excellence. This meeting is designed to ease your concerns and provide you with the knowledge you need to make informed decisions about your health care.

Amanda C. Peltier, MD, MS, is Professor of Neurology and Medicine and Chief of the Neuromuscular Division at Vanderbilt University Medical Center. Her work focuses on peripheral neuropathies, including amyloidosis-related peripheral and autonomic neuropathy. She is active in ATTR neuropathy guideline work and has contributed to identifying clinical trial endpoints for neuropathy.

Learn how realistic expectations can reduce frustration and improve daily well-being.

Dr. Alexia Holovatyk is a licensed clinical psychologist and expert on managing stress through the mind-body connection. With research experience in the fields of psychology and neuroscience and over a decade of clinical experience, she has helped hundreds of clients get to the root of mind-body symptoms like chronic pain, fatigue, anxiety, and depression. In addition to her role as founder of Live Well Psychology Group, she serves as the stress-management consultant for behavioral health app, Alurx; a clinical supervisor; and a lecturer at Dornsife Psychology Department at USC.

Learn how to create a personalized emergency plan, organize critical medical information, and prepare your family and care team before urgent situations happen. This session helps patients and care partners know what to keep ready, who to contact, and how to respond quickly and confidently when unexpected health issues or symptom changes arise.

Natalie Castillo, APRN, is a nurse practitioner with Vanderbilt Health in Nashville. Her clinical interest in cardiac amyloidosis began in cardiology practice in Chattanooga and expanded with the Vanderbilt Heart Failure team, where she focuses on screening, patient education, and the condition’s cardiovascular complexity in care.

Join us to learn about the evolving role of autologous bone marrow stem cell transplantation in treating AL amyloidosis, particularly in the context of new treatments like DARACYBORD. In this session, we'll explain what stem cell transplantation involves, how it compares to newer treatment options, and what this means for you or your loved one's care plan. Our experts will provide clear, easy-to-understand information and will be available to answer any questions you might have, helping you feel more informed and supported in your health journey.

Hasan Siddiqi MD, MSCR, FACC is an advanced heart failure cardiologist and directs its cardiac amyloidosis program. He manages amyloidosis, heart failure, VAD, and transplant patients in the world's largest heart transplant center, leads research and trials, and trained at Harvard, Michigan, Penn, and Brigham.

Join us to explore how rare diseases can impact relationships and discover strategies to strengthen bonds with loved ones. Learn from experts and connect with others facing similar challenges in a supportive environment. Together, we can find strength through understanding and shared experiences.

Missy Maxwell, BSSW, is a dedicated Social Services Specialist with the State Guardianship Division and a retired Family Services Supervisor. Diagnosed with AL amyloidosis in 2015, she underwent chemo and a 2016 stem cell transplant at Vanderbilt. She has maintained complete remission since late 2016 without maintenance medication.

Session topic, presenter, and description are pending confirmation.

Brian L. Miller II, RN, MSN, CCRN, brings 15 years of critical care leadership/process improvement and 5 years of Vanderbilt Heart Failure/Amyloidosis experience. He continuously optimizes Cardiac Amyloidosis processes, coordinates sponsored hATTR genetic testing, facilitates high-cost medication initiation, and administers Amvuttra injections.