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.
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.
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."
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.
The main goal is to evaluate safety and tolerability. Despite the small size of the study, researchers conducted pre-efficacy measurements to preliminarily understand whether NurOwn has a beneficial effect in people living with ALS or not.
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?
I encountered my first ALS reversal in July 2011, more than a decade into my career in ALS, while leading an ALSUntangled review of Dean Kraft, an energy healer. On Kraft’s website was a video about a person named Nelda Buss, who was reported to have been diagnosed with ALS at a top hospital and progressed to where she had lost nearly all movement and was near death. After two years of Kraft’s treatments, she was said to have recovered most or all of her motor function. I was skeptical.
“The results in the study are encouraging providing important data on safety and dosing of the stem cells in study participants,” stated Lucie Bruijn, Ph.D., M.B.A, Chief Scientist of The ALS Association.
For six years, he had been building a '57 Chevy from the frame up. It's 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 as much as they could, 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.
Stem cells are cells that are capable of developing into different cell types, including neurons (brain cells) and glia (brain support cells). Not all stem cells are the same and choosing stem cell populations with specific desirable properties could in fact improve the therapeutic potential of stem cell therapy.
While my dad was clearly saddened by his diagnosis and the inevitable loss of pride and independence, he tried his best to not let it show. He accepted more help than I had ever seen him want or ask for in his life. He learned how to live with a feeding tube, how to talk to doctors, how to apply for VA assistance and how to alter his financial planning for his new reality.
Jim Dolan has always found pleasure in "wandering with a camera and capturing nature as I see it." Despite being diagnosis with ALS in 2015, Jim continues to engage in his passion by photographing the beautiful natural environment around his Ohio home.
On June 10, 2016, The ALS Association brought together the current and past awardees of its Milton Safenowitz Postdoctoral Fellowship to participate in a day-long research symposium and awards ceremony. The workshop was funded by The Greater New York Chapter of The ALS Association.
Edaravone is believed to act as a free radical scavenger, a compound that works by getting rid of toxic waste generated as a normal by-product the cells function. In ALS it is thought that these by-products are not as effectively removed and the compound may be neuroprotective by relieving the effects of this oxidative stress. The increase in oxidative stress is thought to damage motor neurons (cells that die in ALS).
During ALS, the brain and spinal cord are damaged by inflammation, called neuro-inflammation. Inflammation is an immune defense system that works when tissue is damaged. Outside the central nervous system (CNS), it is characterized by redness, tenderness and swelling, as chemicals and immune cells converge to clean up the damage.
My parents and I live very far apart, but we visit as often as possible. Earlier in my disease, our reunions were more normal: catching up, visiting favorite restaurants, hanging out at the bookstore. We did the things we have always done when we got together. Now, one year after being diagnosed and two years into this disease, it’s getting harder to forget I am sick.
Dr. Andrew Geronimo is a talented young investigator using brain computer interface (BCI) technology to improve the lives of people living with ALS by enhancing their ability to communicate. He and his mentor Dr. Zachary Simmons, also at Penn State Hershey Medical Center, have received a grant from The ALS Association to develop new opportunities for BCI technology.
