Living Well with ALS: Navigating Ventilation Decisions in ALS

Decisions about ventilation are among the most complex and personal choices people living with ALS and their families may face. This educational webinar is designed to provide real-world insight, medical context, and compassionate guidance to help individuals feel informed and supported, whatever path they choose.

Choosing to Keep Breathing: One Man’s Journey With ALS Ventilation with Charlie Wren

“I was diagnosed with ALS almost eleven years ago. I’ve been trached, vented, and paralyzed for eight of those years. Before ALS, I was a heavy-duty mechanic and a part-time musician. My progression started in my hands and arms. I use an eye gaze device to communicate, which keeps me connected to the outside world. I decided to get a trach because I still had kids in high school and wanted to see them graduate. This presentation is my journey getting and living with a trach.”

Invasive Ventilation with ALS: A Deeply Personal Choice with Anne O’Sullivan, RRT, RCP, Complex Care Patient Advocate

Anne is a Registered Respiratory Therapist with more than 25 years’ experience in various healthcare settings, including hospitals, durable medical equipment companies, and home healthcare organizations. She has been a Complex Care Patient Advocate with Independence Plus, Inc. for the past 14 years, working with a variety of referral sources, patients and their families, to effectively transition medically complex, technology-dependent individuals from in-patient facilities to their homes.

Anne is a knowledgeable and effective patient advocate, who has devoted her life to educating, empowering, and helping people navigate the challenging healthcare landscape in order to obtain the highest level of benefits and services possible. This career path is personal to Anne, as she is the mother to a medically complex, developmentally disabled adult child. That experience is what motivates her to do her best work every day.

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