Photographer with ALS Captures Nature As He Sees It

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

Milton Safenowitz Postdoctoral Fellows Gather in NYC for ALS Association Workshop

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 Submits New Drug Application for Edaravone to Treat ALS in the US

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.

What is edaravone?

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 of cell 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). Continue reading Mitsubishi Tanabe Pharma Submits New Drug Application for Edaravone to Treat ALS in the US

Targeting Neuro-inflammation to Treat ALS

In 2011, The ALS Association, Wisconsin Chapter began supporting the work of Howard Weiner, M.D., Co-director of the Ann Romney Center for Neurologic Diseases, Brigham and Women’s Hospital around the role of inflammation in ALS. In March 2016, The ALS Association awarded a new Translational Research Advancing Therapy for ALS (TREAT ALSTM) Drug Development Contract  to Dr. Weiner and David Rodman, M.D. at miRagen Therapeutics to continue this work targeting inflammation in ALS.

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

“A Seat at the Table”

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”

Bringing Brain Computer Interfaces Home

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

Geronimo.Andrew
Andrew Geronimo, Ph.D.

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.

In ALS, motor neurons are damaged and those connections break. This results in muscle weakness and eventually paralysis. BCI is revolutionary in that it makes up for that lost connection. Continue reading Bringing Brain Computer Interfaces Home

Embracing My Mother’s ALS

Tessa Shull is a personal assistant to two toddlers, a wife, and a social media specialist/writer who resides in the heart of America, Kansas City. Her mother was diagnosed with ALS in 2015, and since then, it’s been important to find a way to continue making a difference, for both her and her mother, despite the disease. You can check out more of Tessa’s writing on her family and lifestyle blog, homemadeexperience.com.

I put it off as long as I could. I buried myself in friends’ lives, picked at frivolous problems and attended an excessive amount of events. I traveled for three weeks straight. I caught up on every T.V. show I’ve ever enjoyed. I cleaned and organized my entire home. And I sorted through every piece of clothing my children own, which took a full three days in and of itself. Continue reading Embracing My Mother’s ALS