Minnesota lawmaker Dave Lislegard has introduced two measures in the state’s legislature that would invest tens of millions of dollars in amyotrophic lateral sclerosis (ALS) research and caregiver support. The first bill, HF 3603, would appropriate $20 million to the University of Minnesota for competitive research grants to…
Minnesota Legislator Seeks to Fund ALS Research, Help Caregivers
Note: This story was updated April 4, 2022, to clarify that 700 participants, including both ALS patients and healthy volunteers, have been recruited to the study. Mitsubishi Tanabe Pharma America (MTHA) has joined EverythingALS’s consortium to accelerate the development of new digital biomarkers for amyotrophic lateral…
ALS has compromised the breathing of my husband, Todd, to the point where his positioning — unless he is using the Astral noninvasive ventilator — can mean the difference between being able to breathe or not. We only realized how bad it was a couple of weeks ago when we…
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
“The book I’m not reading is riveting The book I’m not reading keeps me up at night The book I’m not reading is better than TV Giving me insight.” These lyrics from “The Book I’m Not Reading,” by singer and songwriter Patty Larkin, vaguely describe a literary quest of…
Dosing has begun in a Phase 2/3 trial of SLS-005, Seelos Therapeutics’ infusion therapy to slow progression in amyotrophic lateral sclerosis (ALS) that is running as the fifth arm of the multi-regimen HEALEY ALS platform trial. The trial (NCT05136885) plans to…
Every few months, I stop and check in on what’s working in my life and what’s not. It’s a personal wellness ritual that’s served me well in the years I’ve been living with ALS. Today, I’m evaluating how well I’ve been following my intention for 2022 to “simply…
A company called ProJenX has been launched and will focus on the clinical development of treatments for brain diseases, starting with prosetin, its lead candidate therapy for amyotrophic lateral sclerosis (ALS). ProJenX was created in collaboration with Project ALS, researchers at Columbia University, and Medical Excellence Capital, which…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
The European Medicines Agency (EMA) has agreed to review a marketing authorization application (MAA) from Amylyx Pharmaceuticals requesting the approval of AMX0035 — a combination of two compounds — for the treatment of people with amyotrophic lateral sclerosis (ALS). The validation comes nearly two months after Amylyx filed the…
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