[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
Today, leadership from Brainstorm Cell Therapeutics announced results from their recently completed U.S. phase II stem cell study of NurOwn® in patients with ALS through a press release and webinar. Below we provide some detail on this study.
The Brainstorm stem cell trial is based off of NurOwn, which is a cell therapy platform centered on mesenchymal stem cells derived from bone marrow samples given by the participants in the trial. They are induced to secrete neurotrophic factors (MSC-NTF), which are a type of nutrient for cells that was previously show to have protective effects in animal models of neurodegenerative disease. Continue reading Brainstorm Announces Positive Results for NurOwn Phase II U.S. Clinical Trial
The son of an art educator, Konnor (@KonnorSchmaltz) lost his mom to ALS a year ago this July. She fought until the very end, and through her family found strength to last as long as she could have. There isn’t a day that goes by where he isn’t reminded of her and will forever cherish the moments they shared together.
“I consider myself the luckiest man in the world …”
Whether recited by fans of America’s Pastime or by Yankees followers, by those who look to it for strength fighting this horrendous disease now or by loved ones of those they’ve lost – the weight these words carry is unfathomable.
But, why? Why would a man who had everything taken away so quickly be so…positive? Was he referring to the four home runs he hit in a single game? Maybe it had something to do with his Triple Crown win in 1934. Did The Iron Horse and future Hall of Famer not understand what most of us here know would happen to him as time progressed? Continue reading The Legacy of Lou Gehrig’s Farewell Speech
My name is Rick Bedlack. I am a neurologist at Duke University in Durham North Carolina, and I started the Duke ALS Clinic 16 years ago. I am working to empower people with this disease to live longer and better lives and to have a greater role in research. I currently run the ALSUntangled Program (www.alsuntangled.org) and The Northeast ALS Consortium (NEALS) ALS Clinical Research Learning Institute. This is the story of a new program I recently started called ALS Reversals.
ALS is a degenerative disease of motor neurons, typically characterized by progressive muscle weakness, increasing disability and shortened survivals. It is widely recognized that ALS progression can be variable. It can be variable between patients, with some folks progressing much more slowly than others. It can also be variable within a given patient, with periods where the disease seems to speed up or slow down for a while. Less appreciated is the fact that ALS progression can stop (plateau) or even reverse with significant recovery of lost motor functions. Continue reading ALS Reversals: What Are They and How Can We Make Them Happen More Often?
My name is Denise Hatfield, and I have been married almost 39 years to the love of my life. We share two beautiful sons, and two amazing grandsons. Rick and I are each others rock, and when he was diagnosed with ALS, my world turned upside down. For 39 years he has been by my side. He has always provided for me. I can’t imagine life without him in it. We do everything together and I will fight this battle to the end and then some. Hoping in his lifetime and in others, I can make a difference.
My husband is a mechanic for big rigs. In January of 2015 he started noticing his hands getting weaker at work. By June he was dropping things.
We took him to the doctor thinking it was maybe carpal tunnel, but I noticed the muscle mass loss in him and the difference in his speech. So we went to a neurologist. He was diagnosed with ALS early, but progressed fast. By October he was out of work.
For six years, he had been building a ’57 Chevy from the frame up. It had been his ultimate dream since he was a kid. So after being off work he decided he had to get his car finished. He worked as much as he could, but got weaker by the day. Our two sons helped around the house, when not working to help him finish this project. We finally sent the car out for a paint job. My husband was still driving but getting weaker every day. Continue reading A Father’s Dream Comes True Despite ALS