By: Melinda Mayden
Every February, we remember, learn, reflect upon, and celebrate Black history. This Black History Month, SimpliHere would like to specifically highlight Black groups and individuals making a difference in the neuroscience and neurodegenerative disease community that ALS is a part of.
The nation’s first African Ancestry Neuroscience Research Initiative was established by the Lieber Institute for Brain Development and African-American community leaders in Baltimore, Maryland in 2019. The aim of the initiative is to “establish a road map to help close the gap in health disparities and accelerate research efforts that will…
By: Emma Comery
An ALS diagnosis comes out of left field. When Christa Thompson’s husband, Olin, was diagnosed in December of 2018, they were left with dozens of questions and little guidance. “Lou Gherig was diagnosed 80 years ago,” Christa reminds us, “and his doctors essentially had the same story to tell him that my husband’s doctor told us.”
The lack of concrete information on ALS progression is well-known in the community, and the push for research, clinical trials, and funding has only truly gained its footing in the past decade, specifically after the Ice Bucket Challenge. …
By Emma Comery
“ALS Doesn’t Stop. We Can’t Either!” This was the rally cry of the 2020 ALS Advocacy Conference.
When the conference on Capitol Hill was cancelled due to Covid-19, there was a brief moment of disappointment and concern before advocates straightened their shoulders and got to work on an alternative: a virtual conference!
Why is this extra special? One of the most ironic truths about ALS advocacy is that the very people whose voices are most important — the patients — are often unable to travel to Capitol Hill due to the severe nature of their illness and…
By Melinda Mayden
This year’s ALS Advocacy Conference, put on by the ALS Association, looked a bit different in 2020 over computer screens and Zoom links, as did everything else this year. But as the resounding rally cry of the conference went, “ALS does not stop, and neither can we.” Many things have been postponed or cancelled this year, but the fight to end ALS is not one of them, and we are proud to have been a sponsor of the virtual event.
By: Emma Comery, SimpliHere
My parents have this small blue throw pillow sitting on their living room couch. It reads, My family tree is full of nuts. A gift from a cousin — a charming, self-deprecating little novelty. My mind flashes back to that pillow again and again while I’m talking to Catherine Kettner, ALS patient, caregiver, and advocate.
Because if Catherine Kettner had that pillow on her couch, it would read, My family tree is full of ALS.
While most of us share things like eye color, height, and hand-me-downs with our relatives, the Kettners also share ALS, or…
An ALS Blogger Inspires Thousands To Share Their Stories
Anyone who thinks being diagnosed with a terminal illness means their life is over needs to meet Sunny Erasmus. Since her doctor confirmed her ALS diagnosis in 2016, Sunny has committed herself 100% to living her best life.
SimpliHere is dedicated to forging and preserving community connection for ALS patients and caregivers. Community is not only a cornerstone of our mission as company, but the pulse of the ALS army. Through shared experience, awareness campaigns, and unparalleled communication, Amyotrophic Lateral Sclerosis is facing a formidable force of patients, caregivers, researchers, policymakers, fundraisers, and advocates.
As new campaigns, organizations, and individuals join the fight against ALS every day, we’re taking a look at just some of the original and inspirational ALS organizations build in the spirit of community.
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 Democrats took the house, and the country is glued to their TVs and phones, waiting to see what happens next.
If you’re like us, you’ve got a big question on your mind: What does the upcoming political transition mean for the fight against ALS?
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 some curve-balls). Talk about stress!
So we did some research, crowd-sourced many of the terrific caregivers sharing their experiences on social media, and came up with this list of mental sticky-notes to help you stay sane and strong.
For your PAL…
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 my veins, the heat of the summer melted it away and set all my nerve endings on fire. Whoa, boy, did I feel alive! And in that summer, a few months after my grandmother died of ALS, feeling alive felt really really good.