The National Institutes of Health on Wednesday announced plans to spend an additional $25 million to create a new program that will speed up ALS research and support cutting-edge approaches to understanding the disease and developing treatments. The money is scheduled to be spent over five years targeting innovative research through a program called Accelerating Leading-edge Science in ALS – or ALS2.
The ALS Association strongly supports initiatives to enable people with ALS to access promising treatments as soon as possible, including prior to FDA approval. Our primary goal is to facilitate the development of effective treatments and help support delivery to everyone with ALS as soon as possible.
The ALS Association and I AM ALS have awarded a $500,000 grant to BrainStorm Cell Therapeutics, a biotechnology company, to support its ALS biomarker research study.
The lack of defined biomarkers for ALS has been a significant challenge to clinicians and researchers who are keen to identify disease risk and onset much earlier and also, to verify the effects of treatments in clinical trials. The funding partnership among The Association, I AM ALS and BrainStorm will draw insights from data and samples collected from patients enrolled in BrainStorm’s ongoing phase 3 clinical trial of its NurOwn treatment to see if the therapy is hitting its targets in the nervous system and generating measurable changes in biomarkers that would signal that the drug works.
Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. June 1 marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.
About 10 percent of all cases of ALS are due to genetic mutations and are inherited from a family member. If there are two or more family members with ALS, the disease is considered familial, and there is a 50% chance of passing that mutation on to each of his or her children. For siblings Jim Weber and Cathy Kettner, it’s the 50-50 proposition that brings them to the fight.
As states begin easing some of the stay-at-home orders put in place in response to the COVID-19 pandemic, people who are high-risk of exposure to the coronavirus are still urged to remain safely at home and to take continued precautions to distance themselves from anyone who may have been exposed to the virus.
QurAlis, a biotech company focused on developing targeted therapeutics for ALS and a recipient of a $250,000 funding grant from The ALS Association in 2019, recently announced that it had raised $42 million in a Series A venture capital financing round to advance its research into ALS treatments. The private investment round brings the total amount raised by QurAlis to $50.5 million.
Meet Connor Way. Connor is your typical 8-year-old boy: he loves to play outside with his friends, go to school, and spend time with his family, especially his grandfather he calls “Papa.” But there’s something different about Connor’s story, his “Papa” had ALS.
An ALS diagnosis is not only devastating to the person receiving it, but to their entire family, and kids are all too often the collateral damage. The disease forces many kids to pitch in as caregivers and often delay their educations. Kids who serve as caregivers often talk about feeling isolated and unsupported by their peer groups.