AL Amyloidosis

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.

AL Amyloidosis

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.

AL Amyloidosis

Medicare and the Evolving Financial Landscape

This ARC TALKS Webinar covered 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

In this ARC TALKS webinar, 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

In this ARC TALKS webinar Dr. Sara Horst discussed how amyloidosis can impact the gastrointestinal tract, GI symptoms, and symptom management.

AL Amyloidosis

Physical Therapy for Amyloidosis Management

In this ARC Talks webinar, physical therapists Kelsi Schiltz, and Katie Johnson provided recommendations for managing neuropathy symptoms.

AL Amyloidosis

Visualizing Amyloidosis: The Role of Imaging

In this ARC Talks webinar for patients, 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

In this ARC Talks webinar, amyloidosis cardiologist, Dr. Mazen Hanna discusses the function of implantable, electronic devices in cardiac management of amyloidosis patients.

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Autologous Stem Cell Transplants in AL Amyloidosis

The Autologous stem cell transplant (ASCT) procedure has been used as a treatment option for AL patients for several years. Eligible patients undergo the process of stem cell collection, high-dose chemotherapy, and transplantation of the healthy stem cells back into the body. This process can be quite challenging for patients, as the body undergoes a complete immune system wipe out and regeneration. The purpose of this booklet is to provide insight into the process, including tips and recommendations for preparation.

AL Amyloidosis

An ARC Fireside Chat

In this ARC TALKS webinar, 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

In this ARC TALKS webinar, 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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AL Amyloidosis: Alison’s story

Alison, a patient with AL amyloidosis, describes her transition from being a nurse to being a patient, her journey to diagnosis, undergoing a bone marrow transplant and chemotherapy, and advice for others living with AL amyloidosis.

AL Amyloidosis

Knowing Your Rights: Understanding Health insurance Coverage

In this ARC talks webinar, 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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Approaches to Treating Relapsed and Refractory AL Amyloidosis

In this ARC TALKS webinar, 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.

AL Amyloidosis

The Role of Stem Cell Transplants in AL Amyloidosis Treatment

In this ARC Talks webinar, 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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Amyloidosis and Nutrition: Eating for Your Health

In this ARC TALKS webinar, 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.

AL Amyloidosis

Gastrointestinal Involvement in Amyloidosis

Many types of amyloidosis can affect patients’ gastrointestinal (GI) tract, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience GI involvement and in fact, some patients may have GI-related symptoms as their most predominant sign or chief complaint.

AL Amyloidosis

The Heart of the Matter: Cardiac Amyloidosis

In this ARC Talks, 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

In this webinar 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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Neuropathy in Amyloidosis

Many types of amyloidosis can affect patients’ nerves, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience neuropathy and in fact, some patients may have nerve-related symptoms as their most predominant sign or chief complaint.

AL Amyloidosis

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.

AL Amyloidosis

Mental Health Matters: Caring for your Wellbeing

In this ARC Talks presentation, 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

AL Amyloidosis

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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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.

AL Amyloidosis

Treatment Overview: Light Chain (AL) Amyloidosis

AL amyloidosis is a serious disease. However, many patients benefit from current therapies, with their lives improved and prolonged, often for many years.

AL Amyloidosis

Disease Overview: Light Chain (AL) Amyloidosis

A diagnosis of light chain amyloidosis (AL amyloidosis) can be confusing and stressful, bringing up many feelings and questions. It is important to learn as much as possible about the disease, its treatment, and how it might affect you.

AL Amyloidosis

Introducción a la Enfermedad: Amiloidosis de Cadenas Ligeras (Amiloidosis AL)

Un diagnóstico de amiloidosis de cadenas ligeras (amiloidosis AL) puede ser confuso y estresante, lo que da lugar a muchas preguntas y sentimientos. Es fundamental que aprenda todo lo que pueda sobre la enfermedad, su tratamiento y cómo le podría afectar.

AL Amyloidosis

Introducción al Tratamiento: Amiloidosis de Cadenas Ligeras (Amiloidosis AL)

La amiloidosis AL es una enfermedad grave que puede ser progresiva y mortal si no se trata. Sin embargo, muchos pacientes se benefician de los tratamientos actuales, lo que mejora y prolonga su vida, a menudo durante varios años.

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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.

AL Amyloidosis

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.

AL Amyloidosis

AL Amyloidosis: Dan’s story

Dan, a patient with AL amyloidosis, describes his journey to diagnosis. A once very active athlete, Dan found himself not able to do his favorite activities anymore. After 10-15 doctors misdiagnosed Dan with GERD, emphysema, and athlete's heart, he finally received the correct diagnosis of AL amyloidosis and started on the road to recovery.

AL Amyloidosis

AL Amyloidosis: Greg’s story

Greg Foster, 4-time world champion and Olympic Silver medalist, discusses his journey to diagnosis. Learn more about his initial symptoms, multiple doctors visits, and what drove him to continue pursuing an accurate diagnosis of AL Amyloidosis, despite being told he had Athlete's Heart.

AL Amyloidosis

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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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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AL Amyloidosis

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