Caring for a loved one with a chronic condition, rare disease, or complex health needs often means managing a million little details every single day. Medications. Symptoms. Nutrition. Sleep patterns. Mood changes. Doctor visits. Emergency notes. These aren’t just notes in a binder or scraps of paper they’re the details that shape care decisions, influence treatment plans, and provide peace of mind. But for most families, keeping up with everything is exhausting. That’s wher

The first three weeks of Dawson’s life were spent in the NICU stabilizing seizures. From about six months to a year old, we faced another difficult stretch of recurring seizures with multiple hospital stays and consistent follow-up appointments. Dawson is now on daily seizure medication and is followed closely by a team of health care providers - a neurologist, ophthalmologist, endocrinologist, and a team of therapists. Early intervention has been key, and today he receives p

Bringing your baby home from the NICU is a moment filled with joy but also uncertainty. After weeks or months surrounded by monitors, nurses, and a medical team, many parents feel like they’re stepping into the unknown.

Advocacy is a word we hear often in healthcare. But for many families, advocacy isn’t a choice, it’s survival. For me, it started the day my son Reynolds was born. From the delivery room to the NICU to countless appointments and hospital stays, advocacy has been woven into every step of our journey.

Caring for someone with a G-tube (gastrostomy tube) can feel like managing a full-time job. From feeding schedules and flush protocols to...

Living with IgG4‑Related Disease (IgG4‑RD) can feel overwhelming—especially when trying to manage symptoms, communicate with multiple specialists, and keep track of tests, medications, and flare patterns. The complexity is real. The support tools have been limited—until now. That’s why the IgG4ward! Foundation partnered with mejo, a digital health company focused on rare and complex conditions, to launch IgG4ME!—a free care coordination and symptom-tracking app built speci