Other Types of 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.

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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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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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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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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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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.

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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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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.

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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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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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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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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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