“The hereditary chart of our family would boggle your mind. It’s filled with heartache and pain and sorrow. But there’s also support. And there’s good parts of the story, too.”
Jeremy Van Tress’ ALS story.
One ALS Patient Finds Hope In Family And Research Data
Anyone who thinks being diagnosed with a terminal illness means their life is over needs to meet Sunny Erasmus.
Meet Cares Services Specialist and professional ALS warrior Juliet Pierce.
Gone are the days of relying on hand gestures and a white board.
“The mission of SimpliHere is to help patients and families impacted by neurodegenerative diseases such as ALS preserve their ability to communicate, cope, and stay connected to the wider community.” During her mother’s battle with ALS, our founder Joanna Rosenberg saw first-hand how easily it is for ALS patients to lose touch with their immediate […]
With Black Friday under our belts, the holidays are rushing toward us like a team of reindeer, and 2019 isn’t far behind. The new year brings new goals, new resolutions, a crisp new wall calendar, and lots of political changes. As a result of the 2018 midterm elections, 100 women were voted into Congress, the […]
When you’re deep in the trenches of ALS, your perspective is thrown all out of whack. You’re doing everything you can to keep your PAL happy and comfortable, you’re worrying if you’re doing more harm than good, and half the time you’re making it up as you go along (because, let’s face it, ALS throws […]
There’s no “easy” part of ALS or any neurodegenerative disease, but one of the most mentally and emotionally frustrating points is when the patient begins to lose their ability to speak. Everyday we take verbal communication for granted, and losing your voice can feel incredibly dehumanizing. With recent increases in neurodegenerative disease awareness — especially […]
Cold. It was really really cold. Like, so-cold-it-burns cold. Like, I-can’t-feel-my-skull cold. Like, it-was-a-super-long-week-and-I-drank-my-frozen-daiquiri-too-fast cold. Weirdly, though, that cold felt good. And it wasn’t just because it was August and I was sweating so much you could fill a swimming pool with it. It felt good because about three seconds after that icy water numbed […]
So. You’re an ALS caregiver now. Maybe you’ve done this before — but chances are you haven’t. Most ALS caregivers have a close relationship with their patient before the diagnosis (they might be your spouse, partner, parent, close friend). You may be thinking, “I love my [spouse/friend/parent/etc], but I don’t know what I’m doing!!” Trust […]