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.
Dr. Marka Van Blitterswijk from the Mayo Clinic Jacksonville is a scientist and one of our former Milton Safenowitz postdoctoral fellows. Since moving on from the program, she has established her own ALS lab as an assistant professor. We recently awarded her a prestigious multi-year grant surrounding her biomarker work.
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.
The ALS Association is proud to have supported the development of bright, young scientists through the Milton Safenowitz Postdoctoral Fellowship program since 2004. The Safenowitz family, through our Greater New York Chapter, founded the program in memory of Milton Safenowitz, who died of ALS in 1998.
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.
One day you find you’re having trouble tying your shoes and buttoning your shirt. After many months, numerous doctor visits, and a battery of tests, you’re told you have ALS. An ALS diagnosis is unbelievably crushing. The impact is impossible to fully appreciate until it hits you or someone you know. The disease is a monster, and it only has one direction. You progress until you can no longer eat, speak, walk, or breathe. Research into finding a cure is vital. That’s why I run, bike, and swim.
In the May 2018 issue of Frontiers in Neuroscience, current The ALS Association-funded researchers, Drs. J. Paul Taylor and Maria Purice of St. Jude Children’s Research Hospital in Memphis, published a comprehensive mini-review describing disease pathways that cause ALS, with a focus on mutations in RNA-binding proteins.
The ALS Association clinic network is focused on high-quality standards and multidisciplinary care. One of those clinics recently forged a particularly innovative partnership for collaborative care.
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.
“Life is full of challenges,” said Gene Connolly. “We get little say in what happens to us, but everything to say in how we deal with it. In fact, our response will define us.”
Frustrated with the limited availability of assistive technology devices for his mother, who was diagnosed with ALS, Dexter Ang quit his finance job, partnered with David Cipoletta, an underwater robotic engineer, and set to work developing technologies that could universally, massively, and quickly improve the quality of life for people living with ALS.
