It’s been more than four years since I was a caregiver for my late husband, Jeff, who died of ALS in May 2020. Caring for Jeff is the hardest and scariest thing I’ve ever done, a fact that took me years to acknowledge out loud because I believed that…
What do we do when ALS caregivers become injured or sick?
People with amyotrophic lateral sclerosis (ALS) who are treated by a neurologist are more likely to receive evidence-based care endorsed by the American Academy of Neurology than those who see non-neurologist providers, according to an analysis of Medicare data. Still, fewer than half of the ALS patients studied…
After my husband, Todd, was diagnosed with ALS at age 39, he grieved the loss of his career and struggled to find a sense of purpose. When he was healthy, he’d hoped to take on new roles with his company and advance in management, but all of that became…
The nonprofit organization ALS Northwest has partnered with the Oregon State Treasury to establish a college scholarship program through the state-administered Oregon College Savings Plan for students who have lost parents or guardians to amyotrophic lateral sclerosis (ALS). ALS Northwest will administer the Elinore Nudelman ALS College…
Tiziana Life Sciences has applied for a grant from the ALS Association to fund an early-stage clinical trial testing intranasal foralumab as a potential therapy for amyotrophic lateral sclerosis (ALS). The association invited the company to apply for the grant, which is offered under the Hoffman…
Amid the busyness of last month’s ALS awareness activities, I almost missed learning about the debut of a special movie that I was quite involved with during its early stages. My friend’s email opened with, “Were your ears ringing last night?” That made me sit up straight. She told…
Eli Lilly has acquired the global exclusive rights to develop and market QRL-204, QurAlis’ investigational therapy for amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) that’s designed to restore UNC13A function in nerve cells. UNC13A is an essential regulator of neurotransmitter release at synapses, a key process…
The U.S. Department of Defense (DoD) has awarded more than $2 million to help Pathmaker Neurosystems conduct a second clinical trial of its MyoRegulator — an experimental, noninvasive nerve modulating device — in people with amyotrophic lateral sclerosis (ALS). “We are very pleased to have…
An advisory committee of the European Medicines Agency (EMA) is leaning against recommending the conditional approval of AB Science’s masitinib as an oral add-on treatment for amyotrophic lateral sclerosis (ALS), the company has announced in a press release. The Committee for Medicinal Products for Human Use (CHMP)…
Last January, my sister-in-law asked what our plans were for my daughter Sara’s high school graduation. She wondered if she, my mother-in-law, and my husband’s siblings should plan to come for the commencement ceremony or a graduation party some other weekend. My husband Todd’s breathing is so compromised due to…
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