Today marks the 6th anniversary of the very first ALS Ice Bucket Challenge, where people around the world came together to raise awareness and funds to end ALS. Since then, thanks to the overwhelming kindness and generosity of our supporters, The ALS Association has been able to commit $111,449,730.53 to research that's led to amazing discoveries, bringing us ever closer to treatments and a cure for this devastating and always fatal disease.
We recently talked with Dr. Zhe Zhang from the Sun Lab at the Johns Hopkins School of Medicine to learn about her unique research project focused on screening for expansion in the C9ORF72 gene, the most common genetic cause of ALS.
Social distancing measures put in place in response to the COVID-19 pandemic created a unique dilemma for chapter staff who teach caregivers how to use critical assistive living devices that enhance the quality of life for their loved ones living with ALS.
Research supported by The ALS Association found that blood plasma analysis could be key to speeding up the process of diagnosing the disease and monitoring disease progression. The research was led by Dr. Michael Bereman from North Carolina State University and supported by a $100,000 grant from The ALS Association, including funding from the North Carolina Chapter.
For people living with ALS, reduced physical mobility and the ability to communicate often cause “Smart” homes – in which household items become connected and are controllable with the use of technology – can greatly improve accessibility and be life-changing for people living with the disease.
ALSUntangled, an award-winning website dedicated to helping people with ALS figure out whether alternative and off-label treatments are effective and appropriate, has created a list of 10 red flags people with ALS should be aware of when considering off-label treatments they read about on the Internet.
We support the A.C.T. for ALS Act (H.R. 7071) and believe it should be strengthened by helping fund ALS research and by ensuring people with ALS in clinical trials can continue receiving treatments that may be helping them. We believe these steps will help improve its chances for passage and ensure it helps even more people with ALS.
In his farewell speech at Yankee Stadium on July 4, 1939, Gehrig called himself the luckiest man on the face of the earth. He wasn’t thinking of himself, though. He was thanking those who had helped him in life. He was helping his family, his friends, and his fans get through the ordeal of his illness.
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.
We believe that systemic racism has a direct effect on the lives of many within the ALS community. We can and must do more to erase the disparities that exist for people with ALS of different races, ethnicities, and socio-economic circumstances.
The ALS Association joins the ALS community in mourning the loss of the legendary Hollywood publicist, Nanci Ryder. Nanci was diagnosed with ALS in 2014 and worked tirelessly through her journey spreading awareness of the disease and raising necessary funds for patient care and research.
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.
Not to be deterred by the COVID-19 pandemic, ALS Association advocates from across the country held more than 350 virtual meetings with members of Congress Tuesday, adapting the Association’s longstanding annual Advocacy Conference to ensure the safety of participants. Historically, upwards of 600 ALS advocates gather in the nation’s capital for days of face-to-face meetings with their elected representatives in the Congress and the Senate.
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.