By the beginning of 2019, three trials are slated to be underway to help develop antisense therapy for people with ALS, dividends on a bold investment The ALS Association made in 2004, when the technology was new. We sat down with Dr. Don Cleveland, a pioneer in the field, for the second part of our series highlighting antisense technology.
ALS affects everyone in the family – even kids. In a new video, real families talk about the impact that a loved one having ALS has on young people - how the disease can be scary and confusing for them and how kids can inspire us all to keep fighting. Watch it and share with your friends and family.
We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.
When Dr. Timothy Miller and his colleagues from Washington University in St. Louis published preclinical data in The Journal of Clinical Investigation last month, showing how second-generation antisense drugs were effective in ALS mouse and rat models, it served as a vivid reminder that every research investment and discovery adds up.
The ALS Association and Teva Pharmaceutical Industries Ltd. (“Teva”) have announced the recipients of the TEVA CNS Target Identification Crowdsourcing Challenge awards for their outstanding proposals to identify novel ALS targets. The two awards will be granted to Dr. Philip Wong, along with Dr. Jonathan C. Grima and Dr. Jeffrey D. Rothstein, all from Johns Hopkins University School of Medicine in Baltimore, Maryland.
For people living with ALS and their caregivers and family, every day adds up. ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.
Our national network of 62 Certified Treatment Centers of Excellence (CTCEs) provides ALS care and services in a supportive atmosphere, emphasizing hope and quality of life.
Biopharmaceutical company Orphazyme A/S launched a phase III clinical trial of arimoclomol, giving a dose to a person with ALS for the first time, the company announced recently. The randomized and placebo-controlled trial will enroll 231 people with ALS in North America and Europe to determine efficacy and safety of the oral drug.
Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.
Our fall Walk to Defeat ALS® season is fast approaching! We talked to people – including Renee Zellweger – about why they come together every year to fight back against ALS.
The ALS Association is fighting back against ALS, in every corner of the country. And this August, as part of our Every Drop Adds Up campaign, we’ve launched an online ALS Auction, which is now LIVE!
We recently announced that we’re providing new funding to allow GNS Healthcare to use artificial intelligence (AI) to create a comprehensive disease model to advance research into ALS. GNS Healthcare will use its powerful machine learning platform, called REFS, in conjunction with the rich Answer ALS patient datasets, which are accessible to clinicians and scientists throughout the ALS research community. The project will be led by Dr. Iya Khalil, chief commercial officer and co-founder of GNS Healthcare.
August begins today, marking a month-long opportunity to raise awareness and support for the fight against ALS. Four summers ago, the ALS Ice Bucket Challenge soaked the world, but we continue to fight for a world without ALS. In that time, The ALS Association has committed more than $96 million to our mission, including more than $84 million to research.
Research funded by The ALS Association helped develop the first mouse model that specifically expresses poly(GR), a type of dipeptide repeat protein associated with C9orf72, which uncovered a new ALS disease pathway. Dr. Leonard Petrucelli’s group at the Mayo Clinic in Jacksonville, Florida, recently published the research in Nature Medicine.
When the Super 16 round of The Basketball Tournament tips off this weekend on ESPN, the ALS community will be represented by a team of hoopsters fighting for a chance to move on to the quarterfinals and secure the $2 million prize, all while fighting to create a world without ALS. Team Challenge ALS will donate $250,000 to the fight against ALS, if it wins the tournament.
A diagnosis of ALS takes its toll in many ways. The person living with ALS eventually loses the ability to move, eat, speak, and breathe. But the effects of this disease don’t end there. Witnessing a loved one’s experience and being a caregiver have profound effects on family members and children, too.
Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving SSDI benefits. Every patient must wait regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.
One aspect of care you may not have considered before is travel and transportation. ALS makes any kind of travel much more complicated, even local trips most of us take for granted, like going to the movies or visiting relatives.
People living with ALS and their families need a great number of care services. We use innovative technology and partnerships to help fill the gaps in care for underserved populations and connect people with ALS to opportunities for greater quality of life.
