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?
Researchers at Neuralstem Inc. are investigating a potential ALS therapy that involves injecting stem cells into a person’s spinal cord. This week, the results of the phase II study that tested the safety of this type of stem cell transplantation were published in the journal Neurology. Below we give some background on this latest study. Continue reading Neuralstem Phase II Stem Cell Trial Appears Safe
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
Stem cell therapy could represent an effective and comprehensive approach to treating ALS. Stefania Corti, M.D., Ph.D., Assistant Professor of Neurology at the University of Milan, and her colleagues set out to find ways to improve stem cell therapy. Their work, supported by The ALS Association, was published on June 6, 2016 in the journal Human Molecular Genetics.
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. Continue reading Choice of Stem Cells Can Improve Therapeutic Potential
Craig Bower is the son of the late Clarence Bower, who is the father in this story. Craig wrote this piece “in hopes it may inspire others” and dedicates it to his father’s memory.
Stories of strength, survival, success and failure. Stories of “overcoming the odds” after a life-altering (insert horrible disease name here) medical diagnosis.
I have nothing against those stories. In fact, I’m continually amazed and inspired by them. They make me feel good and give me hope, which I think is why I read them in the first place. Most of the stories seem to summarize an amazing person that became a voice and advocate for their disease. They organized, researched, educated, shared—and most importantly, fought—until the very end leaving me (and others) amazed and inspired.
But some stories are amazing and inspiring for other reasons.
Continue reading “Everyone has a story”
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.
In addition to sharing his photographs, Jim is also generously helping the fight against ALS. The proceeds from every photo that Jim sells on his website will go to advancing the research, care services, and policy projects supported by The ALS Association.
Below are a few of Jim’s most recent photographs. To view more of his work, you can visit his website at http://jimadolan.com/. Continue reading Photographer with ALS Captures Nature As He Sees It