Join us for a heartfelt session where we explore the profound connection between our nervous system and our capacity for healing. Discover how nurturing safe and meaningful relationships can significantly impact our well-being. We'll share strategies to strengthen your support networks, providing you with tools to foster a sense of safety and belonging, crucial for anyone navigating the challenges of a rare disease. This is a space to learn, share, and grow together, surrounded by others who understand your journey.

Jennifer Boyd, PA, is an integrative clinician, ecopsychologist, and founder of Boyd Wellness, where she specializes in the treatment of complex chronic conditions, nervous system regulation, and women’s health. With advanced training in functional and biological medicine, somatic therapy, and psychedelic-assisted therapy, Jennifer brings a deeply integrative approach that bridges modern science with relational, experiential, and nature-informed models of care. Her work is rooted in a central belief: the body is not broken—it is adaptive, intelligent, and always communicating. Jennifer works with individuals and groups in immersive care settings designed to restore resilience, clarity, and a felt sense of safety in the body. Known for her grounded, intuitive presence, she helps people translate symptoms into meaningful signals and reconnect with their innate capacity for healing. She lives and works in Connecticut, where her practice is shaped by a close relationship with the natural world. Website: www.boydwellness.com Instagram: @boydwellness

Bring someone with you and make it a superpower. Learn how to choose the right person, assign roles, and use them to capture details and advocate calmly. We will create a simple briefing and debrief routine. Leave with a plan that reduces stress and improves follow through. Includes a simple role sheet so your advocate knows what to do.

Tom is a rare disease technology educator.  He advises patient organizations and pharmaceutical companies so that they can better serve the needs of their patient communities. Tom is living with Myasthenia Gravis and works closely with the MGFA (Myasthenia Gravis Foundation of America) and serves as a National Patient Ambassador.

Join us to uncover the basics of genetic inheritance in ATTR amyloidosis, where we'll explain how genes play a role in this condition. Learn from genetic counselors about their role in guiding and supporting patients and families through the genetic testing process. This session aims to demystify genetic testing, making it more understandable and less daunting, and will provide you with the knowledge and confidence to discuss these topics with your healthcare provider.

Rachel is a board-certified genetic counselor at the University of Chicago. She sees patients in the Cardiovascular Genetics Clinic and the Amyloidosis Clinic as well as at-risk family members to have personalized discussions on the impact of genetic testing in personal health choices. She is currently the president-elect of the Illinois Society of Genetics Professionals (ISGP) and was previously the co-chair of the Education Committee. As a part of her role within ISGP, she is working tirelessly to move legislation through the IL General Assembly to protect Illinois residents from genetic discrimination. Rachel is also an active member the National Society of Genetic Counselors (NSGC) and the Heart Rhythm Society (HRS).

Join us as we explore the concepts of "clean pain" and "dirty pain" and how distinguishing between them can transform our relationships and emotional wellbeing. In this session, we'll discuss strategies to address and process pain in a healthy, constructive manner without ignoring the genuine emotions and experiences that come with life's challenges. Learn how to reduce unnecessary suffering while staying true to your feelings and those of your loved ones, enhancing mutual support and understanding in your relationships. This is a safe space for sharing and growth, where we honor the reality of each person's journey.

Ariela Sarai is an executive and personal development coach with over 35 years of experience helping people navigate life’s complex and challenging circumstances. Known for her direct and deeply compassionate approach, she supports people in facing what’s real, untangling difficult situations, and finding clarity even in the midst of uncertainty. www.ArielaSarai.com

Top patients close the loop. Learn a simple system to keep labs, referrals, imaging, and follow ups from falling through the cracks. We will build a tracker, reminders, and a weekly review habit. Leave with a follow through workflow that saves time and prevents last minute chaos. Includes a weekly 10 minute review that keeps you on track.

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 insightful session where we'll explore the vital role of advanced cardiac imaging in diagnosing and managing cardiac amyloidosis. Learn how these cutting-edge techniques can provide clearer images of the heart, leading to better treatment decisions and outcomes. Our experts will also discuss new developments in the field and how they might benefit you or your loved ones. This is a great opportunity to understand more about your condition and ask any questions in a supportive and caring environment.

Dr. Nitasha Sarswat is a cardiologist at UChicago Medicine specializing in advanced heart failure, transplantation, and cardiac amyloidosis. She combines clinical expertise with research to help patients better understand and manage the impact of amyloidosis on the heart.

Living with a chronic illness can often feel isolating, but nurturing relationships can be a profound source of strength. In this session, we'll explore practical strategies to help you maintain and deepen your connections with loved ones, ensuring you feel supported and understood. Learn how to communicate your needs effectively and how to foster empathy and patience in relationships, creating a safe and nurturing environment for yourself and those you care about. Together, we'll discuss ways to build a supportive network that empowers you and enhances your 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.

Know what to do when symptoms change. Learn when to message, call, go to urgent care, or go to the ER, plus what to say so you get the right care fast. We will build an escalation ladder and an ER handoff card. Leave with clarity and confidence for stressful moments. Includes an ER summary card and a clear escalation ladder.

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 to learn about the crucial role of maintenance therapy in managing AL amyloidosis and how it can help stabilize the disease and improve quality of life. This session will cover what maintenance therapy involves, why it's important, and how it fits into the overall treatment plan. We'll also discuss tips for managing side effects and maintaining your health during treatment. This is a great opportunity to understand more about your treatment options and how to support ongoing wellness.

Join us for a heartwarming session where we explore how to maintain and strengthen relationships amidst the challenges of living with a rare disease. Learn practical strategies for open communication, mutual support, and understanding, all designed to help you and your loved ones grow closer through adversity. We'll share tools and tips on how to keep your connections strong, ensuring that no one feels alone on this journey. Together, we'll discover how courageous optimism can transform relationships in times of uncertainty.

David Berez is a former police officer, Drug Recognition Expert, author, and resilience practitioner with more than 33 years in emergency services. He is the founder of Six4 Consultants and facilitates resilience-based programs for first responders and patients. In 2024, he earned his Master of Applied Positive Psychology from the University of Pennsylvania.

Sleep affects everything, mood, pain, and resilience. Learn a realistic sleep plan for nights disrupted by symptoms, worry, or meds. We will build a wind down routine, a middle of the night reset, and a next day recovery plan. Leave with tools you can use tonight. Includes a plan for insomnia nights and the next day after.

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 empowering session focused on understanding and managing cardiac amyloidosis. Learn directly from healthcare professionals about the latest treatment options, how they work, and what you can expect during your treatment journey. This session will also provide practical tips for living with the condition and maintaining heart health. Connect with others who share similar experiences, in a supportive and informative environment.

Dr. Jeremy A. Slivnick: is an assistant professor of medicine cardiologist specializing in cardiac imaging. Dr. Slivnick uses advanced imaging, such as cardiac magnetic resonance (MRI), computed tomography (CT) and echocardiography, to accurately evaluate and diagnose a wide range of heart and vascular diseases.He has particular interest in using cardiac imaging to help to improve the diagnosis and evaluation of heart failure including cardiac amyloidosis, hypertrophic cardiomyopathy and cardiac sarcoidosis.

Living with a condition that restricts social activities can often feel isolating, but you're not alone. Join us for a supportive session where we explore practical strategies to maintain and strengthen relationships, even when your social interactions are limited. We'll share tips on using technology to stay connected, and how to communicate your needs effectively to your loved ones. This is a safe space to learn, share, and connect with others who understand.

With decades of international business leadership and master’s degrees in organizational development and marriage and family therapy, Ian Warburg brings a unique, therapeutically informed approach to coaching couples. He helps partners strengthen connection, resilience, and joy.

 

 

Movement is medicine when it is done safely. Learn how to build strength and stamina without triggering setbacks, even with limited energy. We will create a pacing plan, a minimum viable routine, and a progression rule. Leave with a plan that feels doable and repeatable. Includes a low energy routine and safe progression guidelines.

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 explore kidney transplantation as a treatment option for Amyloidosis, focusing on when it might be considered and what to expect. We'll discuss how Amyloidosis affects the kidneys, the process of evaluating eligibility for a transplant, and the potential benefits and challenges of this treatment. Whether you're considering a transplant yourself or caring for someone who is, this session will provide valuable insights and support.

Dr. Kourosh Rezania: is a professor of Neurology and an expert in neuromuscular diseases. He is particularly interested in the evaluation and treatment of peripheral neuropathies, myopathies, myasthenia gravis and amyotrophic lateral sclerosis (ALS). Dr. Rezania is also an active researcher and teacher. Currently, he is conducting clinical trials on chronic inflammatory demyelinating polyneuropathy. (no mention of amyloidosis????) —this was not modified from web page.

Living with a rare disease can often feel isolating, but building a strong support team can make a significant difference. In this session, we'll explore practical strategies for engaging friends, family, doctors, and advocates to create a network that understands and supports your unique needs. Learn how to communicate effectively with your care team, and discover tips for nurturing supportive relationships that empower you and enhance your well-being. Join us to gain insights and tools that will help you strengthen your personal support system.

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.

Food does not need to be perfect to help. Learn simple routines that stabilize energy, digestion, and symptoms across long term conditions. We will build a stable week plan, hydration cues, and a grocery short list. Leave with rules you can follow even when you are tired. Includes a grocery short list and a stable week meal rhythm.

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.