On Thursday, July 12, the ALS community will have the opportunity to meet with representatives from the FDA and the pharmaceutical industry during an ALS Community Workshop in order to discuss the latest FDA guidance document related to ALS drug development. The Workshop will be streamed live on our ALS Community Workshop webpage, Facebook page, and YouTube channel from 9:00 a.m. EDT to 3:00 p.m. EDT.
The ALS Association is hosting ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry on July 12 in Washington, D.C., and the entire ALS community is invited. The goal of the workshop will be to provide targeted feedback and information to the Food and Drug Administration (FDA) from people with ALS, caregivers, and stakeholders to inform revisions of the FDA’s Draft Guidance on ALS Drug Development.
Erin Brady Worsham, an award-winning artist based in Nashville who has lived with ALS for more than 24 years, takes her philosophy about life from golf.
Late last month, Congress passed a $1.3 trillion fiscal year 2018 Consolidated Appropriations spending bill that included a $3 billion increase to funding for medical research to the National Institutes of Health (NIH). Funding to the NIH has increased to $37 billion, the largest bump they have seen in years.
Our beloved daughter, Carmen Schentrup, was taken from us on February 14, one of 17 victims of the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla. Her life was cut too short. For the last month, we have tried to make sense of the senseless, and we have grieved with the other families.
The Hollywood Reporter recently published a great article about new discoveries toward a cure for ALS, thanks to contributions and support from Nanci Ryder, veteran talent publicist, and her friends and supporters. Nanci has bravely fought ALS since 2014 and has enlisted the support of such stars as Courteney Cox, Don Diamont, and Renee Zellweger.
We wanted to clear up some misinformation floating around on social media regarding our research funding and our current assets. We also wanted to explain our approach to funding research.
When Thelma “TAG” Martinez was diagnosed with ALS in 2013, she was 65 years old. Her caregiver and husband of 46 years, Henry, quickly became involved in the services provided by their local chapter.
From that moment, Kids4Cure: Two Brothers on a Mission, was formed. The boys registered a team in the Cincinnati Walk to Defeat ALS in the fall of 2004 and rallied support from across the community. In their inaugural year, they raised more than $80,000 and brought nearly 550 people to walk with them.
Meet Roger Craig, a three-time Super Bowl Champion and dear friend of Dwight Clark, who was recently diagnosed with ALS. Learn how Roger plans to support Dwight in his fight against ALS.
Thomas Todd is one of the hundreds of people living with ALS who was impacted by Hurricane Harvey. As Harvey approached, Thomas was able to safely ride out the storm with friends, but the hurricane had a devastating impact on his house. Harvey flooded his house with nearly two feet of water.
My heart sinks as my mind races with questions. What happened to this man? This is ALS? I thought he was just diagnosed? I knew it was rapidly progressing, but it can’t happen this fast, can it? My train of thought was interrupted by another question from the doctor: “Can you speak at all?” He shakes his head. No. Only the ventilator speaks.
The ALS Ice Bucket Challenge showed us that when small things add up, they can make the impossible happen. As part of our #EveryDropAddsUp campaign, we're asking YOU to share what things add up to make a difference in your life. Below are some of the responses we've received so far.
Kevin Gosnell, founder of ALS ONE, passed away on Monday because of complications from the disease. Gosnell was diagnosed with ALS in spring 2015 and immediately put his business acumen and CEO leadership skills to work, convening the best minds in the ALS community. He founded ALS ONE in January 2016 and brought together leading neurology experts and care specialists from Massachusetts in partnership to leverage their institutions’ strengths to expedite progress toward finding a treatment for ALS within the next four years.
Last year, I accepted a Webby Award in New York City for co-founding the ALS Ice Bucket Challenge. Acceptance speeches are limited to just five words, so when I went on stage I said: "Every August Until A Cure."