The hubbub percolating around the SpaceX launch last weekend reminded me of the role a committed and engaged support team plays in averting and staving off peril. In any successful outcome to a human hostage confrontation, two common strategies unfold. First,…
Houston, We Have a Problem
Two bills making their way through Congress are intended to improve access to medical therapies for those most in need, and in particular, those with amyotrophic lateral sclerosis (ALS). Sen. Mike Braun, R-Ind., announced his plan to introduce a bill to hasten the regulatory process for making promising therapies…
During my past 10 years of living with ALS, I’ve had to adapt to a lot of new normals. One of the most important has been learning to navigate what I call my “ALS time zone.” It represents the unique pace or rhythm of my day, versus the pace…
The COVID-19 pandemic has imposed new challenges on diagnosing, monitoring, and caring for people with amyotrophic lateral sclerosis (ALS), from the absence of in-person visits to a lack of available equipment at hospitals. But the expansion of telemedicine may be a way to overcome these challenges, and allow…
For people with amyotrophic lateral sclerosis (ALS) currently on non-invasive ventilation, modifications to existing equipment may help to minimize risk of an infection for both them and their caregivers during the COVID-19 pandemic. The equipment adaptations were discussed in a letter to the editor, “Modification…
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene therapies to treat a variety of rare diseases. That’s the consensus of industry experts who spoke in a May 26 webinar…
The Phase 2 clinical trial investigating Clene Nanomedicine‘s CNM-Au8 as a potentially disease-modifying therapy for people with amyotrophic lateral sclerosis (ALS) has enrolled more than half of its participants ahead of schedule. RESCUE-ALS (NCT04098406) dosed its first participant in January,…
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‘Graves Are for the Living’
On Memorial Day, my mom, the kids, and I visited Lakeside Cemetery in Hancock, Michigan. My mom and the kids left in time to attend the Memorial Day service. I arrived late, just as it concluded, because I needed to help Todd in the bathroom and then…
Mitsubishi Tanabe Pharma America (MTPA) has set up a support program for adults living with amyotrophic lateral sclerosis (ALS) and wanting to learn more about this disease and Radicava (edaravone), an intravenous ALS treatment the company markets in the U.S. Called JourneyMate, the program connects ALS patients…
A large part of successfully living with ALS is to face each challenge with a positive mindset and find workable solutions so I can continue to move forward with my life. Lately, a 4-by-6-inch piece of cloth — yes, a face mask — is putting me to the test. What’s…
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