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.

It takes courage and compassion to be a police officer. The same is true for a caregiver. Just ask Clifton Huffmaster whose day job finds him working as a detective in the Special Victims Unit with the Concord Police Department in Concord, California. This takes courage. He’s also a graduate from the Theological Union at Berkeley College from which he holds a PhD. Maybe that’s where compassion comes from. When Clifton’s wife Lauren was diagnosed with metastatic breast cancer his world turned upside down as he assumed the unfamiliar territory as her caregiver. This is where he found the need to be both courageous and compassionate.

On this episode of In Sickness. Men and the Culture of Caregiving, Clifton and Lauren dive deep into the emotions of living with breast cancer in the shadows of uncertainty. They have gone from the depths of fear to the top of Joy’s Mountain. To learn more go to insickness.org.

For all caregivers, their lives are divided into two parts. Before diagnosis and After Diagnosis. This is particularly true for those who must manage one of the more insidious illnesses, Alzheimer’s Disease, where the changes taking place before the diagnosis and once the disease has become fully onset, are significant for the patient and care partner alike. Marty Schreiber is the former Governor of Wisconsin, author of, My Two Elaines. Learning, Coping and Surviving as an Alzheimer’s Caregiver. The book chronicles Marty’s experience as primary support and caregiver for his wife of 60 years who was diagnosed with Alzheimer’s. The book and this podcast provides a transparent look into the heart of the disease and its personal, physical and emotional impact on the patient and those courageous souls, like Marty, who provide unrelenting support for their loved ones. To learn more and find resources related to this episode, go to insickness.org.

For Josh Argall, life couldn’t get much better. He was a 25-year-old first-time father of, Devin, who quickly became the center of Josh’s universe. Josh’s world was rocked when he and Devin’s mother noticed that their three-year-old son was somewhat slow in reaching some of the physical milestones like crawling and walking that are typically associated with children his age. In the months following, Josh’s world changed dramatically as Devin went through numerous doctor visits and misdiagnoses. Finally, a specialist at Children’s Hospital in Milwaukee diagnosed Devin as having Duchenne Muscular Dystrophy, a rare and progressive neuromuscular disease that, at the time, had few treatment options and little hope for a cure or long-term survival. The diagnosis shattered Josh’s world and sent him spiraling into a world of sadness, depression and despair.

On this episode of In Sickness. Men and the Culture of Caregiving, Josh shares how he went from the lowest of the lows to the realization that if his son was going to get better, he needed to face this adversity and join in the effort. Debra Miller, CEO and Founder of CureDuchenne, joins Josh in the discussion and provides valuable insight into the disease, and the patient and caregiver journey. To learn more and find resources related to this episode, go to insickness.org.

When you have a child diagnosed with any illness, you can only hope your efforts don’t require a lifetime commitment. The hope is for a short-lived illness that comes with a diagnosis followed by a cure. For former MassBio President, Bob Coughlin, he has lived through the in utero cystic fibrosis diagnosis of his son, Bobby, the physical challenges of caring for a young CF patient, and the constant involvement as a CF patient advocate raising awareness and all-important research money. Also, a time where CF treatments improved allowing Bobby to enjoy his teen years, finish high school, graduate college and begin his professional career. Despite this progress Bob has not remained stagnant and continues to advocate for patients with CF and other unmet medical needs. He also never stopped plying his most important role as his son’s caregiver where he remains committed, passionate, and always involved. Bob is joined on the podcast, Charlotte McKee, M.D., Chief Medical Officer of Sionna Therapeutics, a clinical stage biopharmaceutical company, developing therapeutics to treat cystic fibrosis.

To learn more, visit insickness.org.

At 17, Mason Smith was your typical teenager and living a life filled with school, sports, lots of hanging out with friends and more growing up. That all came to an abrupt stop when his mother was diagnosed with a fatal and ultra-rare neurodegenerative disease, adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). This young man who was just sprouting his wings took a harsh turn into adulthood as part of his Mom’s primary care team when she began to exhibit behaviors that were noticeable to Mason’s Aunt Heidi. Together, they both felt the need for further medical testing given that ALSP had already taken the lives of other family members. Mason knew that an ALSP diagnosis would change his mother’s life and usher him into adulthood and caregiving. To learn more visit insickness.org.

If you’re looking for a fair fight, don’t pick one with cancer. Odds are that cancer rarely loses and its adversary won’t have a puncher’s chance of bringing on defeat. Anyone confronted with caring for someone with a cancer diagnosis typically has no shortage of personal will, but not necessarily successful in finding a way to beat cancer. Just ask Miguel Barron who supported his wife in her two-year ordeal living with metastatic breast cancer, providing constant love, compassion, and dedication. Miguel also endured the emotional pressures of caring for someone with a progressive and punishing illness like cancer as he lived with loneliness and an overwhelming sadness during this time. Miguel captured his experience in a no holds-barred book, The Boxer’s Corner, that peers deep into his soul and shines a questioning light on the industry that creates medicines and supports patients. To learn more visit insickness.org.