When I was growing up, many of my neighbors participated in the U.S. Naval Academy Sponsor Program, as we lived just a few miles from the school’s campus in Annapolis, Maryland. Under the program, local families “adopted” midshipmen, offering a home away from home to the students, who could come…
Treatment with CNM-Au8 in the HEALEY ALS platform trial prolonged survival for people with amyotrophic lateral sclerosis (ALS) relative to those who received the investigational treatment zilucoplan or a placebo in a separate arm of the study, according to new analyses. The benefits were most pronounced in the…
“I can’t believe I could’ve had longer footrests this whole time,” my husband, Todd, said this morning as he peered down on his wheelchair while I transferred him using our overhead lift. “I’ve been so nervous about my toes, especially now that I’m having such a hard time driving.” Todd…
Denali Therapeutics‘ oral candidate DNL343 has failed to reduce levels of an established biomarker of nerve cell damage in adults with amyotrophic lateral sclerosis (ALS). That’s according to new data from the DNL343 arm of the HEALEY ALS platform trial (NCT04297683), where patients who received the experimental…
I’ve been living with ALS for the past 15 years, and although it’s filled my days with life lessons and moments of gratitude, there have also been many twists of irony. One of the biggest ironies? I sometimes feel out of place in a community that’s so warm and…
A bipartisan team of lawmakers in the U.S. House of Representatives and Senate is pushing for legislation to help ensure that spouses of veterans who die from amyotrophic lateral sclerosis (ALS) have access to benefits. The Justice for ALS Veterans Act was introduced in the House by Brian Fitzpatrick,…
Pathmaker Neurosystems has received three new patents — two in the U.S. and one in Japan — that cover the use of its noninvasive neuromodulation technology in people with amyotrophic lateral sclerosis (ALS). The patents, which specifically cover the systems and methods used for treating ALS and related diseases,…
The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the…
Tiziana Life Sciences is seeking regulatory clearance in the U.S. to launch a Phase 2 clinical trial evaluating foralumab nasal spray, its lead therapeutic candidate, as a treatment for amyotrophic lateral sclerosis (ALS). The filing of the company’s investigational new drug application with the U.S. Food and Drug…
It’s become exceedingly difficult for my husband, Todd, to leave our home now that he’s in an advanced stage of ALS. His neck is weak because of disease progression, and he uses noninvasive ventilation nearly all the time. To make matters worse, we live in a northern climate with…
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