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.