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.
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.
The story of Steven’s Stompers begins with Steven Davis. Steven is a lifelong resident of Bladen County, N.C., an avid outdoorsman, a pipe fitter by trade, and an outstanding athlete. He began noticing symptoms in February 2012 and was diagnosed with ALS by a neurologist on April 30, 2012, at age 34.
Since our founding in 1985, we have put collaboration at the forefront of everything we do. The gift of the ALS Ice Bucket Challenge in August 2014 gave us the unique opportunity to up our game in establishing innovative research partnerships around the world.
Have you ever been frustrated by not being able to get your point across? People living with ALS often face this challenge. But thanks to our care services staff and partners, and assistive technology, people living with ALS can keep communicating, even after they’ve lost their voices.
The ALS Association teamed up with a group of expert data analysts at Mastercard who spent more than 24 consecutive hours to help our national office and chapters gather insights into improving operations and strategies to advance our mission to find a cure for ALS.
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.