What’s New in ALS Therapies (2025): Gene Treatments, Clinical Trials, and a Quiet Kind of Hope
There is something deeply challenging about waiting. If you’ve sat in a hospital chair, foot tapping the linoleum floor, or refreshed your inbox, hoping for an answer that never arrives, then you can relate to the experience of waiting. For families living with ALS, waiting becomes its own form of grief. What are we waiting […]
The Hidden Cost of ALS: What a 48 Day Hospital Stay Reveals
When people talk about ALS, they often speak about the physical changes. The muscle weakness. The speech loss. The breathing machines. But what rarely gets said out loud is the financial cost that follows a diagnosis. The kind of cost that doesn’t show up on pamphlets or in support groups but arrives later as line […]
Disability Pride Month: Why Accessibility Still Fails Us
There are moments that reveal how invisible disability still is. Not in theory, but in practice. Like pulling into a hotel parking lot and realizing the accessible entrance is blocked by planters. Like checking into an “ADA compliant” room, only to find the bed too high for a transfer, or the bathroom door too narrow […]
What ALS Caregiving Really Looked Like in June
June has felt like a year. I’ve always known what it means to be a caregiver, but this month put that knowledge to the test. On May 17, Pete went into the emergency room. On June 28, he’s finally coming home. It’s been over five weeks. Five weeks of hospital beds, machines, unfamiliar routines, and […]
ALS Awareness Month
May means something different here. For most people, it’s a month that signals the start of summer. For us, it’s personal. Every single day of ALS Awareness Month brings a reminder of why Let Hope Grow exists in the first place. Not to be loud. Not to be trendy. But to hold space for what […]
Full Circle: The Ice Bucket Challenge Then and Now
You might remember it. A bucket. A shiver. A splash. Laughter that sometimes masked confusion. In 2014, the Ice Bucket Challenge swept across the internet. It was playful, chaotic, and scroll stopping. People drenched themselves in ice water to raise awareness for ALS, commonly known as Lou Gehrig’s disease. Millions joined in with some taking […]
One Day at a Time: Diane and Bill’s ALS Journey
Imagine waking up each day next to the person you love the most, just like you have for more than 50 years. You still hold hands, still sip coffee together in bed, and still laugh at the smallest, most mundane things. But now your hands do more than hold. They lift, support, wash, and carry […]
A Lifeline for ALS Families – Real Help, Real Hope
A diagnosis changes everything. It shifts time, warps reality, and steals the foundation beneath your feet. What once felt steady suddenly isn’t, and the world that existed before those three letters—ALS—becomes something distant, something unreachable. For families walking this path, the questions never end. How do we manage this? How do we afford this? How […]
Our ALS Journey Featured on Do Hard Stuff
Pete never asked for this. Neither did I. But here we are, living a life we never planned, fighting battles we never thought we’d have to fight. ALS doesn’t wait for you to be ready. It takes. It steals. It turns simple moments into mountains you never imagined climbing. And yet, here we are, still […]
The Quiet Love of Caregivers on Valentine’s Day
The world drapes itself in red and pink, storefronts overflow with heart-shaped reminders, and love songs hum softly through café speakers. But for many caregivers, Valentine’s Day doesn’t come wrapped in ribbons and candlelight. It arrives with a quiet ache, an unspoken longing for a love that has shifted into something far more profound—something selfless, […]