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.
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.
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.
About the Award
The award was founded by the Safenowitz family through The Greater New York Chapter of The ALS Association. It is in memory of Mr. Safenowitz, who died of ALS in 1998. These awards are to encourage and facilitate promising young scientists to enter the ALS field. Fellows work with a senior mentor and receive extensive exposure to the ALS research community through meetings and presentations, like this workshop. After completing this fellowship, approximately 90 percent of the awardees stay in ALS research. They go on to establish their own laboratories to continue studying ALS and mentoring more ALS researchers along the way. Continue reading Milton Safenowitz Postdoctoral Fellows Gather in NYC for ALS Association Workshop
Mitsubishi Tanabe Pharma Corporation (MTPC), which is locally based in Jersey City, N.J. with a head office in Osaka, Japan, announced yesterday that a New Drug Application has been submitted to the U.S. Food and Drug Administration (FDA) for edaravone (MCI-186) for the treatment of amyotrophic lateral sclerosis (ALS).
Those in the ALS community may have questions about what this means for them. Below we provide some background information on edaravone.
The goal of their project is to accelerate a novel microRNA (miRNA) therapeutic approach to reduce neuro-inflammation, in order to bring it into clinic trials and meet a significant medical need in ALS. Below we provide some background on this exciting work. Continue reading Targeting Neuro-inflammation to Treat ALS
Before being diagnosed with ALS at age 28, Rachel Doboga loved her job teaching 5th grade English. Now, she advocates for a cure for ALS and write stories on her blog, “How I Live Now: Life With ALS.” Through her writing, she hopes to increase ALS awareness and create a community for other people with ALS and their loved ones.
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. Continue reading “A Seat at the Table”
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. Together they work to train people living with ALS and their caregivers on how to setup and best use BCI in their homes through a telemedicine program. Through this work, they are continuously optimizing the BCI system.
“The ultimate goal for our research is make a difference now for people living with ALS. By listening to their needs and engineering a BCI to meet those needs,” stated Dr. Geronimo.
What is Brain Computer Interface (BCI)?
BCI is exactly what it sounds like: a direct connection between the brain and the computer. Normally, connections are made between the brain and muscles via motor neurons. Motor neurons in the brain relay a signal to the muscles to move.