In Sickness

Collaboration between caregivers and biopharma companies can lead to innovations that benefit both the patient and their support systems, leading to better health outcomes, more effective therapies, and a higher quality of life for all involved. In this special Rare Disease Day 2025 podcast you will hear the story of Ron and Marla Chapleau and how they have cared for their Aiden who has an ultrarare neurodegenerative disease for over two decades. You will also hear how one company, Vigil Neuroscience, is developing a therapy to help treat Aiden’s condition and the strong bond that has developed between Vigil and the Chapleau family. to learn more, go to insickness.org. [https://www.insickness.org]

At first glance Sawyer looks like most Golden Retrievers. Floppy ears, kind eyes and a never-stop-wagging tail. But then you step inside the home of Ron and Linda Baxter and see him in action helping Linda who has MS and is in a wheelchair. On any given day Sawyer can aid Linda in retrieving and carrying items, opening and closing doors, providing mobility assistance, and assisting with navigation. Plus, he provides emotional support to Linda as well as Ron who finds him invaluable in reducing the pressures and commitment of being a caregiver. This episode looks at caregiving through the eyes of Sawyer, the couple who embraces him and the organization who trains him. To learn more, go to insickness.org.

All caregivers reach a point where the responsibilities of caregiving bumps heads with the demands of life. It’s usually a combination of physical, emotional and/or mental exhaustion brought on by caring for a loved one over a prolonged period. That’s what happened to podcast guest Kate Washington, who cared for her husband as he endured a series of serious health setbacks. She tried to keep up with the increasing demands of his many illnesses, without adequate support or self-care. Until she couldn’t. It’s an experience she chronicled in her excellent book, Already Toast: Caregiving and Burnout in America [https://www.amazon.com/Already-Toast-Caregiving-Burnout-America/dp/0807011509]. Joining Kate on the podcast to offer a clinical perspective is Michelle Feng, a licensed psychologist and healthcare executive with a specialization in geriatrics, behavioral medicine, and caregiving. To learn more, visit insickness.org.

For this episode of In Sickness. Men and the Culture of Caregiving we took the podcast on the road. At the invitation of Pfizer, Inc. we recorded our podcast at the company’s New York City headquarters as part of their annual “Patients in Focus” week. Host, Paul Kidwell, had the pleasure of speaking with Pfizer’s VP, Global Patient Advocacy, Emma Andrews and Jason Resendez who is the CEO of the National Alliance for Caregiving. Among the topics discussed were the evolving role of caregivers, the need for more interaction between caregivers and the biopharmaceutical industry, and some of the needs that both groups are filling.

Stories of individuals living with and enduring the challenges of any disease never fail to move and inspire others. This is especially true when the illness becomes fatal, and life is shortened. Maria Middleton was an exceptional young girl when she was diagnosed with a rare brain cancer and only 15 when she passed away. I use the word exceptional because during her final months when she was experiencing the brunt of her illness, Maria took the time to touch and move others. She wanted to strengthen their own personal resolve and encourage them to never lose hope. She cared that much. Maria’s message continues to ripple around the world even after her death. Maria’s parents Susan and Brian share the profound story of their daughter on this episode of In Sickness. Men and the Culture of Caregiving. To learn more, go to insickness.org.