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. Continue reading ALS Entrepreneur Kevin Gosnell Passes Away Leaving Important Legacy in ALS ONE
[UPDATED AUGUST 25] We’ve updated this post with more of the #EveryDropAddsUp stories you’ve submitted!
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. If you’d like to submit your own “Every _____” story, take a look at our Submission Guidelines or leave your response in the comments section!
This August, we’re sharing stories of the individual actions that add up to make a difference in the lives of people living with ALS. 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. Nell and her family are also featured in our Every Drop Adds Up video, crossing the finish line together.
Every day adds up!
I’ve been partnered with ALS for eight years.
It is not a gentle companion.
The disease is progressive and exacting.
I haven’t eaten food or talked for five years.
I can’t laugh, sing, or scratch an itch.
But I think I am winning.
Somewhere between my first bout with pneumonia and the blood transfusion for low iron, I put down my weapons.
The disease was too cunning and huge for me to take on!
Instead, I practiced acceptance and hope.
As the disease whittles away at my 5′ frame, I gather my friends and family around me.
We believe, we are patient: there is a cure.
Life is too good to give up.
We want to hear from you, too! How would you fill in the blank? “Every ___________ adds up.” Tell us about your ALS journey and your commitment to advance the fight against ALS. Tag your answer on social media with #EveryDropAddsUp or send us a blog post!
One of the many blessings of the Ice Bucket Challenge craze that swept the globe in 2014 was that it made people aware of ALS, a brutal disease that robs a person of his or her ability to walk, talk, and eventually, breathe. Prior to the Ice Bucket Challenge, most people only knew about ALS if a friend or family member had been diagnosed with it.
The great news is that those donations are already having an impact on the research. The ALS Association spent some of the Ice Bucket Challenge donations on Project MinE, which just announced on Monday that it had discovered a new ALS gene, one that is among the most common among people who have familial ALS.
While the Ice Bucket Challenge raised great awareness about ALS and the need for greater funding for research and care services, many people still don’t know what exactly ALS is or how it affects a person. Fortunately, former NFL player Steve Gleason has documented his journey and is sharing it in a new documentary that opens this weekend. The Daily Beast has called it “the most powerful, poignant documentary of the year.” Continue reading Ice Bucket Challenge Made World Aware of ALS, “Gleason” Brings it Home
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.
Are NEK1 mutations associated with both familial (inherited) and sporadic (non-inherited) ALS?
Yes – NEK1 mutations are associated with both familial and sporadic ALS. Together, NEK1 is associated with 3% of all ALS cases.
How is the NEK1 gene inherited?
Currently, researchers do not know how the NEK1 gene is inherited, its penetrance (i.e. the proportion of individuals with the NEK1 mutation that show ALS symptoms) or whether the mutation is sufficient alone to cause disease. Researchers are now working diligently to answer these significant questions.
Most familial ALS genes are autosomal dominant for inheritance, meaning that the parent who has a genetic change (mutation) that causes ALS has a 50% chance of passing that mutation to each of his or her children. It is also important to understand that if a person inherits the genetic change, the person is not certain to develop ALS symptoms. Continue reading NEK1 Discovery: Questions and Answers
Pat Quinn is a co-founder of the ALS Ice Bucket Challenge. He was diagnosed with ALS in March 2013.
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.”
Since then, this mantra has become a rallying cry of the ALS community. It’s been awesome to see the progress we’ve enabled since the Challenge soaked the world in August 2014. Continue reading ANNOUNCING Every Drop Adds Up
[UPDATED AUGUST 8, 2016]: On August 16, co-leader for the U.S. arm of Project MinE, Dr. John Landers joins Project MinE co-founder Dr. Leonard van den Berg for a Webinar overview of the exciting discovery of NEK1. Mark your calendars today!
[UPDATED JULY 26, 2016]: Over the last day, The ALS Association has received multiple questions surrounding the NEK1 gene discovery and how it affects people living with ALS. For answers to the most common questions, please visit our NEK1 Questions and Answers post.
Today researchers from Project MinE, a large, international ‘big data’ initiative funded by The ALS Association through ALS Ice Bucket Challenge donations*, shared the exciting news that they have identified a new gene, NEK1, that ranks among the most common genes that contribute to ALS.
It is known that 10 percent of ALS cases are familial, meaning genes are inherited from a family member. The other 90 percent of ALS cases are sporadic, or without a family history. It is very likely that genetics contribute, directly or indirectly, to a much larger percentage of ALS cases. The discovery of NEK1 – which is present in both sporadic AND familial ALS – gives scientists an exciting new target for drug development. Continue reading Breaking Research News: Largest Ever Study of Inherited ALS Identifies New ALS Gene NEK1