We’ve listed a few resources here to launch the site and will be adding more sites, tools, articles after we return from our trip to Dallas.
What is ALS?
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks both upper motor neurons (connecting brain movement areas to the spinal cord) and lower motor neurons (connecting the spinal cord with muscles).
People with ALS experience progressive weakness in muscles responsible for movement, speaking, swallowing, and breathing. These symptoms are due to dysfunction and death of motor neurons, disconnecting them from their target muscles. Muscles that are disconnected from their parent motor neuron become small (“atrophy”) and exhibit spontaneous twitching (“fasciculations”). People with ALS also may develop stiffness, called “spasticity”, which is also do to the death of motor neurons.
The current treatment of ALS is focused on managing symptoms and maintaining strength and the best possible quality of life, as there is no cure for the disease.
– excerpted from NEALS.org
Nonprofits supporting patients, research, and advocacy
I AM ALS
Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.
Steve and Michel Gleason founded Team Gleason with the mission to improve life for people living with ALS by delivering innovative technology and equipment, as well as providing and empowering an improved life experience.
ALS Association Golden West Chapter
The mission of the ALS Association is to discover treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
HEALEY ALS Platform Trial
Based out of the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, this is the first ALS platform trial, accelerating the path to new ALS therapies by testing multiple treatments at once, reducing the cost of research by 30%, decreasing the trial time by 50% and increasing patient participation by 67%.
Northeast ALS Consortium (NEALS)
NEALS was founded in 1995 with 9 academic clinical centers in the New England area, the NEALS membership has grown to 140 research centers committed to performing research in Amyotrophic Lateral Sclerosis (ALS) and Motor Neuron Disease (MND) as rapidly as possible. To achieve this goal, NEALS functions as an academic research consortium, a contracted research organization, and a resource tool for ALS community.
The ALS Therapy Development Institute (ALS TDI)
ALS TDI is the world’s foremost drug discovery lab focused solely on ALS. As a nonprofit biotech it operates without regard to profit or politics. Led by drug development experts and people with ALS, the Watertown, Massachusetts based lab is funded by a global network of supporters unified to end ALS.