Articles & News

Stories, updates, and resources from the IVUN community.

Dr. Bernardo Selim to Deliver Margaret Pfrommer Memorial Lecture

Bernardo Selim, MD, FCCP, will present this year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation on Sunday, October 18, honoring the legacy of a polio survivor and patient advocate.

October 2026·IVUN staff

Feature StoryAdvocacy

The Threat to Section 504: What's at Stake for the Disability Community

For nearly 50 years, Section 504 of the Rehabilitation Act has been a cornerstone of disability rights in the United States. Recent legal and political challenges have placed it under threat — raising serious concerns for millions of Americans with disabilities.

June 2026

Networking

Network Update

Sharing the work of others: EP Magazine’s Annual Healthcare Issue on disability-aware healthcare, and the CCHS Network’s 2025 call for research proposals.

April 2025·IVUN staff

Advocacy

Advocacy Roundup

Policy and rights developments affecting ventilator users: senators question plans to dismantle the Education Department, a federal budget deal leaves disability programs in limbo, and the DOJ withdraws key ADA guidance documents.

April 2025·IVUN staff

Research

Recent Relevant Publications

Summaries and links to selected professional, disability, and disease journals and newsletters — Vol. 39, No. 1 (Spring 2025).

April 2025·IVUN staff

Advocacy

Advocacy Roundup

Policy and rights developments: the Supreme Court overturns Chevron deference, raising concerns for disability regulations, and the DOJ cites multiple states for ADA violations.

October 2024·IVUN staff

Feature StoryCommunity

Connecting Through Care: Cynthia Bissell's Lifelong Commitment to Tracheostomy and Ventilator Support

In July 1993, Cynthia Bissell faced the challenge of caring for twin sons born three and a half months prematurely. Her journey led her to create 'Aaron's Tracheostomy Page' in 1996, which evolved into a Facebook group with over 8,000 members serving as a vital support network for tracheostomy and home mechanical ventilation families worldwide.

September 2024·IVUN staff

Advocacy

Advocacy Roundup

Policy and coverage developments affecting ventilator users: CMS finalizes its Access Rule, the Biden administration seeks $150 billion for home and community-based services, and insurers tighten access to home ventilators.

August 2024·IVUN staff

Research

Recent Relevant Publications

Summaries and links to selected professional, disability, and disease journals and newsletters — Vol. 38, No. 2 (Summer 2024).

May 2024·IVUN staff

Feature StoryCommunity

Camp Inspiration: A summer oasis for ventilator-assisted youth

Camp Inspiration, located at Double H Ranch in New York's Adirondack Park, is a family program for campers aged 5-21 who require respiratory assistance. IVUN spoke with Chris Woll, MD, and Suzanne Barry, DO, to learn more about the camp experience.

May 2024·IVUN staff

Feature StoryEducation

Breathing Is a Human Right: Equity for Ventilatory Disability

The Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Lisa F. Wolfe, MD, FCCP. The lecture, presented at CHEST 2022, educates physicians about home mechanical ventilation and the health professional/patient partnership.

February 2023·Lisa F. Wolfe, MD, FCCP

Industry News

Reminder: Philips Respironics Has Issued a Recall on the Following BiPAP Devices

The FDA alerts patients, caregivers, and health care providers that Philips Respironics recalled certain BiPAP machines that may contain contaminated plastic in the device motor, which could release volatile organic compounds (VOCs) or cause the machine to fail suddenly.

October 2022·IVUN staff

Feature StoryEducation

Living Long, Thanks to Iron Lungs, Cuirasses, and BiPAPs

A polio survivor's decades-long memoir of life with mechanical ventilation — from an iron lung in 1949, to a cuirass, to a BiPAP — and the hard-won lessons of adapting to each technology.

August 2022·David Ronfeldt

Feature StoryCommunity

Our Journey

Jacqueline Sharkey shares her family's 27-year journey caring for their son Ryan, who became ventilator dependent at four months of age.

June 2022·Jacqueline Sharkey

Feature StoryCommunity

Growing Up with CCHS

Shortly after Jason Sloan was born in 1977, he was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). His mother, Debra, shares the story of growing up with CCHS and the challenges and triumphs along the way.

April 2022·IVUN staff

Feature StoryEducation

Artificial Ventilation, A True Lifesaver for Children With CCHS and ROHHAD

The 2021 Margaret Pfrommer Endowed Memorial Lecture was awarded to Debra Weese-Mayer, MD, Chief of the first Center for Autonomic Medicine in Pediatrics at Lurie Children's Hospital.

February 2022·Debra Weese-Mayer, MD

Feature Story

Ventilator Users Speak: Navigating the Pandemic

IVUN members share their experiences of adapting, coping, and navigating life with a ventilator during the first year of the COVID-19 pandemic.

February 2021·IVUN staff

Past Issues

Previous bimonthly issues of Ventilator-Assisted Living.

Recent Publications

Vol. 38, No. 3 (Fall 2024)

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