The ALS Therapy Development Institute (ALS TDI) is proud to announce that the first participant was successfully given a dose of AT-1501 in the first clinical trial of the experimental treatment for amyotrophic lateral sclerosis (ALS). The phase 1 safety trial is enrolling healthy volunteers and people living with ALS, following the acceptance of an Investigational New Drug (IND) application by the Food & Drug Administration (FDA). A total of 8 people living with ALS will receive AT-1501 in this study, with the aim of determining safety and tolerability of the experimental antibody. The trial, sponsored by Anelixis Therapeutics, LLC, will also determine the pharmacokinetics of AT-1501, i.e. how the drug acts within the body.
Did you ever stop to think about how water can move? Or think about how people can move as well? I’m not talking about specific actions, but just the basic ability. But there’s a caveat that many people forget: those with ALS lose the natural ability to move as their motor neurons die and their muscles cease functioning.
On Oct. 18, Patty Haberstroh got news no person hopes to receive in her lifetime. She was diagnosed with amyotrophic lateral sclerosis, colloquially known as Lou Gehrig’s disease, a neuromuscular degenerative illness that causes muscle atrophy and the eventual loss of all voluntary muscle control.
When Haberstroh, a Westport resident since 1990, told her husband, Charlie, and their four children of the diagnosis, she said they were understandably upset, but vowed do something and felt they could make a difference in fighting the disease.
Catherine Wolf, an experimental psychologist whose research focused on enhancing interactions between humans and computers — and who, after illness left her paralyzed, relied on her laptop to communicate, using a system that let her wiggle an eyebrow to pick out letters — died on Feb. 7 at her home in Katonah, N.Y. She was 70.
Paul Rinderknecht can walk, still, yet each step is labored. His right fingers curl into his palm. A machine keeps him breathing through the night.
Two years with Lou Gehrig’s disease has taken much. But terminal illness also forged a purpose: To see a day when he can exercise the right to bet his life.
Harvard Stem Cell Institute (HSCI) researchers have identified a compound that helps protect the cells destroyed by spinal muscular atrophy (SMA), the most frequent fatal genetic disease in children under 2 years of age.
When the ALS Therapy Development Institute invited me to speak at their annual White Coat Affair gala last October, I took advantage of the opportunity to tour the Institute’s lab where they are performing fast-track ALS research. While there, our tour passed by the freezer where AT-1501, a potential effective treatment for both ALS and Alzheimer’s, is stored.
Former All-American Graham Harden, diagnosed with Lou Gehrig's disease in 2016, has been sharing his lacrosse skills by coaching both boys and girls lacrosse at Mariemont High School. He hopes to step back on the field this spring as coach. "If I don't show them that I can fight it, why would they do that on the field?" Harden asked.
A team of biomedical scientists has identified a molecule that targets a gene known to play a critical role in the rapid progression of amyotrophic lateral sclerosis (ALS), sometimes known as Lou Gehrig’s disease, the neurodegenerative disease that affects motor neurons — nerve cells in the brain and spinal cord that link the nervous system to the voluntary muscles of the body.
With the wind chill making it feel like 14 degrees on the beach on Saturday, February 4 and the ocean temperature a shockingly cold 42 degrees, the brave souls who participated in Saturday's Valentine Plunge in Manasquan, New Jersey gambled and lost. But the Joan Dancy and PALS Foundation that works on behalf of people with Lou Gehrig's Disease came out the winner.
Patients with amyotrophic lateral sclerosis (ALS) have intact eye muscle movement, even at more advanced stages of the disease, according to new research. However, the reason remains unknown. Researchers say that discovering how this happens may help in the design of novel treatments to fight the loss of muscle activity in ALS patients.
ALS patients with complete paralysis can communicate in a limited manner using a computer interface that detects their thoughts based on blood oxygen levels in the brain, according to a new study.
September 16 was a warm and sunny day in Franklin Park, Illinois, when Augie and Lynne Nieto arrived at the Life Fitness factory there.
It had been nearly 16 years since Augie, the cofounder and former chief executive of the company, had last entered the building, which had been its headquarters when he served as president.
A protein called Nrf2 could clear the harmful, misfolded proteins that cause Parkinson’s and other neurodegenerative diseases — including amyotrophic lateral sclerosis (ALS) — by activating “housekeeping” mechanisms within cells, according to a new study in Parkinson’s models.
In the midst of adversity, Gleason found purpose pouring his energy into Team Gleason. Among other things, his non-profit organization helps people with similar diagnosis continue crucial communication through technology.
Gleason and his wife Michel also used technology to preserve memories of their journey for their young son, Rivers. They soon realized their intimate family footage might benefit an audience beyond the three of them.
Lynne and Augie Nieto have been approached multiple times about sharing their journey. Not until they met the incredible team from PCH films, did they say yes. “Augie” will be released in late 2017.
At any given time, 20,000 Americans battle amyotrophic lateral sclerosis, the degenerative neurological condition more commonly known as Lou Gehrig's disease. Renowned Durham architect Phil Freelon is one of them.
Just six months before Freelon’s most recent project, the Museum of African-American History and Culture, opened on the National Mall in Washington, D.C., he was diagnosed with ALS.
Increased excitatory toxic signaling in neurons in the part of the brain controlling movement triggers the breakdown of cells long before any symptoms of amyotrophic lateral sclerosis (ALS) are noticed — at least in mice with ALS.
Jiou Wang, a neuroscientist at Johns Hopkins University, and colleagues have found that C9orf72 plays an important role in the cell’s recycling system, a process called autophagy.
The Massachusetts man who inspired the Ice Bucket Challenge that's raised millions of dollars nationwide for ALS research is being honored at his home.
The NCAA hand-delivered an award to Pete Frates, the former Boston College baseball captain who touched off the national craze.