MSI Press Blog

  It just happened. Not overnight. I just seemed like it. All the rainbow makers had lived -- and become adults. Now what? As we were to find out, the answer to that question was on us. We found out the Catch-22 of adult rare disease care. Pediatric teams were clearly trained and resourced for congenital complexity—but they discharged based on age, not need; typically, age 12. Sorry, Doah, they said, we just now have a diagnosis for you -- CHARGE Syndrome (a newly discovered syndrome), but you are a big boy now, about to be a teenager, so goodbye. At last, finally, we had a label, but no way ahead and no doctors. PCPs available in our area, of course, knew nothing about CHARGE, but they did their best to treat Doah, treating him like any other teenager and then young adults, and now aging adult. Adult systems, we learned, are siloed and symptom-focused, often lacking interdisciplinary coordination or rare disease literacy. Clinicians fear liability or “not knowing”, so th...

Today’s mission: accompany my daughter to a new doctor’s appointment. I sat quietly, letting her self-advocate—because that’s what strong women do. I chimed in here and there with family history, but mostly, I was the silent sentinel beside her. Then came the intake question: “Is your mother still alive?” Excuse me? I look dead?? Was I too serene?  Did my quiet presence read as ghostly? Did I seem soporific? My daughter laughed. “She’s sitting right here beside me.” The assistant turned crimson. I straightened up, punched the air, and offered to do jumping jacks to prove my vitality. She stammered, “I’m so sorry—I thought you were sisters.” Well then. Grandma Ninja: 75. Daughter: 49. Apparently, we’re aging in formation. Message of the day: Let your daughters speak. Let your silence speak. And when needed—let your vitality kick . Also: work out. At any age. Dick Van Dyke is 100 and still works out at the gym three times a week. If he can do it, so can Grandma N...

  They say 65 is the geriatric threshold. I say: thresholds are for doorways, not identities. I didn’t suddenly become fragile when Medicare kicked in. Yes, I have osteopenia—thanks in part to years of “normal” omeprazole doses before anyone warned me it was quietly eating my bones. But I still climb ladders, carry cats, and troubleshoot household systems faster than most twenty-somethings. My bone scan may whisper caution, but my life shouts resilience. So, if “geriatric” means I qualify for discounts and confuse algorithms—fine. But don’t expect me to sit still, wear beige, or fade quietly. This Ninja has decades of stealth left—and a few choice words for the formulary. Grandma’s Ninja Training Diary  is the inspiring true story of a septuagenarian grandmother who dares to dream big—by training for  American Ninja Warrior . Teaming up with coach and trainer Brittany Renz, she embarks on a three-year journey to build strength, resilience, flexibility, balance, and end...

  Bahrain Imagine standing at the edge of a burial mound field at dusk. Behind you, the towers of the capital city shimmer like glass lanterns. Before you, the desert breathes with ancient memory. And all around, the sea whispers the stories of traders, poets, and pilgrims who once called this island home. That is Bahrain. The name means “two seas” ( bahr = sea, ain = dual grammatical ending). Bahrain is a shimmering archipelago in the Persian Gulf, where ancient burial mounds rise from desert plains and the sleek skyline of Manama glints across the water. It’s a place where Bronze Age silence and 21st-century ambition coexist—sometimes in the same breath. It is also hot. By mid‑summer, Bahrain feels like it has been placed under a glass dome. Temperatures climb well above 40°C (104°F), and the humidity rolls in from the Gulf like a warm, wet curtain. On the hottest days, the air itself feels heavy—almost tactile. It’s the kind of heat that doesn’t just sit on the skin; ...