Webinars

Coffee Chat with ARC

To wrap up 2024, this month’s ARC Talks Webinar consisted of a conversation with ARC staff. We shared highlights from 2024, started to look ahead to 2025, and answered your questions about the work we do for the amyloidosis community.

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Caring for the Caregiver

In honor of National Family Caregivers Month, ARC hosted a discussion between Debra Ruehlman, amyloidosis family caregiver, and Ann Payne, MSW, ARC Clinical Care and Education Manager. This webinar explored topics such as self care, self advocacy, and community resources.

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Medicare and the Evolving Financial Landscape

Covering information on Medicare basics, choosing a Part D plan, and coverage gaps, ARC was joined by Sylvia Gary from the Centers for Medicare and Medicaid Services (CMS).

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Clinical Trial Updates for the AL Community

ARC's own Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on AL amyloidosis. Kristen also discussed the direction future research.

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GI Disturbances and Symptom Management

Dr. Sara Horst discussed how amyloidosis can impact the gastrointestinal tract, GI symptoms, and symptom management.

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Clinical Trial Updates for the ATTR Community

ARC's own Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on ATTR amyloidosis.

Webinars

Physical Therapy for Amyloidosis Management

Physical therapists Kelsi Schiltz, and Katie Johnson provided recommendations for managing neuropathy symptoms.

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Visualizing Amyloidosis: The Role of Imaging

Dr. Sharmila Dorbala explained the role that medical imaging techniques play in both diagnosing and managing amyloidosis.

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Devices for Heart Improvement

Amyloidosis cardiologist, Dr. Mazen Hanna discusses the function of implantable, electronic devices in cardiac management of amyloidosis patients.

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An ARC Fireside Chat

The dedicated team behind the transformative initiatives of ARC discuss the impactful work of the Leadership, Research, Development, Communications, and Community Alliance departments.

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Navigating Care Choices at the End of Life

Jill Waldron, NP and Rebecca Kirch provide guidance on navigating care choice options for amyloidosis patients and caregivers during health decline.

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Knowing Your Rights: Understanding Health insurance Coverage

Alicia Lawrence, Information and Resource Services Manager at the National Organization for Rare Disorders (NORD), discussed health insurance policies within private and government issued insurance.

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Kidney Disease Presentation in Amyloidosis

Dr. Nelson Leung focused on renal involvement in AL, AA, ALECT2 and ATTR amyloidosis, while discussing treatment and response assessments for each type.

Webinars

Cardiac and Neurological Approaches in ATTR Management

Dr. Nativi-Nicolau and Dr. Elizabeth Mauricio discussed the decision pathway in management of ATTR amyloidosis from the cardiac and neurological standpoint.

Webinars

Approaches to Treating Relapsed and Refractory AL Amyloidosis

Dr. Heather Landau discussed current treatment options for relapsed and refractory AL amyloidosis patients. Dr. Landau also talked about the current testing methodology used to monitor a patient’s disease status, and the role maintenance therapy may play in the management of relapsed AL amyloidosis.

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The Fundamentals of Clinical Trials and Current Advances in Amyloidosis Research

Dr. Morie Gertz gave a 101 overview of clinical trials, including consideration in how they are designed, and the phases needed for drug development. Dr. Gertz also discussed current clinical trials that are evaluating the next generation of drugs for the treatment of AL and ATTR amyloidosis.

Webinars

Hereditary ATTR Amyloidosis: The Role of Genetic Testing and Recommendations for Genetic Carriers

Cardiologist Dr. Ahmad Masri MD, MS and genetic counselor Emily Brown, MGC, CGC discuss the role of genetic testing in hereditary ATTR amyloidosis care, along with providing disease management recommendations for genetic carriers.

Webinars

The Role of Stem Cell Transplants in AL Amyloidosis Treatment

Sandy Wong, MD, and Nancy Wong, NP, discuss autologous stem cell transplantation as a therapy choice for AL amyloidosis patients. Dr. Wong outlines each phase of the process and goes over the function of stem cell transplants in the context of medical care. Nancy Wong discusses how to prepare for a stem cell transplant while highlighting key care considerations for each phase of therapy. Her concluding remarks focus on important considerations during the recovery period.

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Overview of ARC’s Research Programs and Results of the Patient Community Survey

Kristen Hsu, Executive Director of Research, and Sabrina Rebello, Research Manager, provide an overview of ARC’s research programs, share findings from our 2022 community survey results, and highlight the future direction of ARC’s research.

Webinars

Current ATTR landscape: Treatments and Trials

Amyloidosis expert Dr. John L. Berk presents the most current treatment options for ATTR amyloidosis. Dr. Berk also discusses clinical trials and future research. The webinar concludes with a Q and A session.

Webinars

Amyloidosis and Nutrition: Eating for Your Health

Briana Pineau, MS, RD, LDN, a registered dietician at Boston Medical Center, discusses the role nutrition can play in the management of amyloidosis symptoms. In addition to covering gastrointestinal involvement associated with various types of amyloidosis, Briana covers the broader health benefits of a balanced diet.

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The Heart of the Matter: Cardiac Amyloidosis

Dr. Kevin Alexander, a cardiac amyloidosis specialist from Stanford University, discusses the cardiac signs and symptoms to recognize, treatment and management options for each type of Amyloidosis and the future direction of research in the field.

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Empowering Patients: Navigating Your Care

Isabelle Lousada shares her experiences with amyloidosis and the lessons learnt on how to become an empowered and informed patient. Lisa Mendelson, nurse practitioner from Boston University’s Amyloidosis Program provides a valuable medical perspective about how to build a successful relationship with your care team. Original presentation date June 23, 2022.

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AL Amyloidosis: Treatment Approaches

Dr Sasha Tuchman, Director of the Myeloma and Amyloidosis Program at UNC gives an overview of AL amyloidosis, before taking a deep dive into the different types of currently available treatments for different disease stages. He also touches on future directions including clinical trials. The webinar concludes with an audience question and answer session.

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Mental Health Matters: Caring for your Wellbeing

Rare disease mental health expert Kym Winter will equip you with the resources and tools you need to take care of your mental health. In this interactive session, you will be introduced to the Stress Bucket Approach, which is a simple way of thinking about and looking after your own - and others’ - emotional wellbeing in order to live well with the impacts of a rare disease such as amyloidosis. Original presentation date February 23, 2022

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Coffee with ARC: Learn about ARC’s work

In this ARC Talks special presentation, Coffee with ARC, some members of the ARC team will provide an overview of ARC's history and areas of focus, as well as our plans for 2022 and beyond. Original presentation date December 9, 2021

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Living Well with Amyloidosis

In amyloidosis, common symptoms such as gastrointestinal manifestations and neuropathy are often the most troublesome for patients. In our ARC Talks Webinar for patients and caregivers, amyloidosis experts from across multiple specialties explain approaches for symptom management. Our experts provide you with the knowledge you need to live well with amyloidosis. Original presentation date October 26, 2021

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The Role of Gene Editing in hATTR Amyloidosis

In this ARC Talks Webinar for patients and caregivers, Professor Julian Gillmore, the Head and Research Lead of the National Amyloidosis Centre in London, describes the role of gene editing in hereditary diseases like hATTR, and shares the early results of Intellia’s CRISPR trial. Intellia’s Head of Development for In Vivo programs, Dr. Liron Walsh, joins Professor Gillmore for a question and answer session.

Webinars

Taming Wild-Type

This ARC Talks Webinar covers everything that patients and their families should know about wild-type transthyretin amyloidosis. Dr. Martha Grogan, Founder and Director of the Cardiac Amyloid Clinic at the Mayo Clinic, covers disease progression, prognosis, treatment options, and more. Dr Grogan then answers questions from the audience from our live presentation on June 10, 2021.

Webinars

Stem Cell Transplantation in AL Amyloidosis

This ARC Talks Webinar covers everything that patients and their families should know about the role of stem cell transplantation in AL amyloidosis. Dr. Sandy Wong, Director of the Amyloidosis Program at the University of California San Francisco, describes the process of stem cell transplantation for AL amyloidosis patients. Terry Fogaren, a nurse practitioner from Tufts University Medical Center, shares information on how to prepare for and best recover from the procedure. The presentations are followed by a Q&A session from our live presentation on May 13, 2021.

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Amyloid Neuropathy Burden and Mangement

In this ARC Talks webinar, Dr. Kelsey Barrell from the University of Utah explains what causes neuropathy and other neurological symptoms in amyloidosis patients and offers suggestions to help manage these symptoms.

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GI Disturbances and Symptom Relief for Amyloidosis

Dr. John Clarke, a gastroenterologist and motility specialist with Stanford Medicine, covers everything that patients need to know about GI involvement and symptom management in amyloidosis, followed by a Q&A session.

Webinars

Caregivers: A Guide to Self-Care

Nancy Verel, a nurse at the Cleveland Clinic, shares her story about her family's journey through her husband's AL amyloidosis diagnosis and treatment. Robert David from BMC Cancer Support Programs provides coping and support strategies for caregivers.

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Physical and Occupational Therapy – Managing Your Amyloidosis

In this patient webinar, Mayo Clinic's occupational therapist Sarah Dahlhauser, OTD, OTR/L, and physical therapist Sarah Boyd, PT, DPT, discuss exercise principles for maintaining mobility and function, and home modifications for improved safety for amyloidosis patients.

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Genetic Testing for Hereditary TTR Amyloidosis

Genetic counselors Emily Brown and Katelyn Swade provide an overview of the science of genetic testing. They also discuss importance of genetic counseling for hereditary ATTR patients and their families.

Webinars

Webinar: What is Expanded Access?

This webinar covers access to innovative new therapies through expanded access programs with guest speakers Jennifer Miller, PhD, Assistant Professor at Yale University School of Medicine and Alison Bateman-House, PhD, MPH, Assistant Professor at NYU School of Medicine.

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