From the time I was a small girl I knew that my grandmother, Mildred Anderson, died from complications resulting from ALS. She died in February 1960, when my mother was preparing to give birth to my older brother. One of the big regrets of my mother’s life is that her mother never got to meet her four children and see what wonderful people they became. It is not just every person that has ALS that adds up, it is all the people in their lives and those that come after them. It could be said that “Every Family Adds Up.”
To point at a day on the calendar as the best and worst day of your life is a rare feat. On May 27, 1985, my wife was born - best day of my life. On May 27, 2016, I was told I'm dying - worst day of my life.
The exciting finding that reduction of a single protein, SUPT4H1, specifically reduces toxic gene products associated with C9orf72 long repeat expansions, gives researchers a new potential therapeutic target.
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.
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.
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.
Today's story comes from Nell Hardy, pictured above at the 2016 Walk to Defeat ALS in Manhattan with her three sons, Brendan (left), Connor (middle), and Emmet (right). Her fourth "son," Rico, is perched on her lap, which is his favorite spot to spend every day.
I was fortunate to see an early screening and I can say that “Gleason” is raw, honest, and uncompromising. It’s not just about the physical toll that this horrible disease takes on a person, though there is certainly plenty of that. It also shows the emotional toll the disease takes on everyone, especially the person living with ALS and his or her immediate family members.
Over the last day, The ALS Association has received multiple questions surrounding the NEK1 gene discovery and how it affects people living with ALS. Below are some common questions and our answers, along with places to read more information.
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."