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.
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.
Stress granules are clumps of RNA and protein that accumulate in a cell when it experiences stress. This accumulation allows space for specialized RNA-binding proteins that are designed to clean up the cell. Once the cell is cleaned up, the accumulated RNA and protein disperse out of the stress granule, and the cell goes back to continuing its normal function.
Jeff passed away in 2006, after battling for three years. It was a quick ending to a long journey; my family saw him three weeks earlier, then he was gone. Looking back at it almost 10 years later is still difficult, no one likes to think of their loved ones dying, but also it’s been a time to be thankful ALS came into my life.
It was almost a year ago that I fell in love with Jane Babin’s poetry. Her son, a former student of mine, had given me her book Pearls in the Pond a few months after she had passed away after an eleven year battle with ALS (Lou Gehrig’s disease). I found myself immersed in her poems, lectures, thoughts on life and mortality, and coping with her disease.
All of us living with ALS have to have hope: hope for a treatment and hope for a cure. That’s why I’m excited about a new report that came out today from the Pharmaceutical Research and Manufacturers of America (PhRMA) and The ALS Association, “Medicines in Development for Rare Diseases.”
Meet Dr. James Connor, an ALS researcher who leads a team at Penn State Hershey Medical Center in Hershey, PA that recently received an ALS Association Investigator-Initiated grant to move his exciting research forward. The ALS Association spoke with Dr. Connor about his investigations into how a therapeutic iron solution is potentially protective in ALS and how collaboration at Hershey bridges the lab and the ALS clinic.
Since 1996, the Sheila Essey Award for ALS Research has been presented by Dick Essey at the American Academy of Neurology Annual Meeting, in memory of his wife Sheila, who battled ALS for 10 years and passed in 2004. This year, the award was presented to Ammar Al-Chalabi, Ph.D., FRCP, DipStat from King’s College London. Find out how Dr. Al-Chalabi’s work is driving progress in ALS research forward.
Collaboration is a cornerstone of The ALS Association’s global research program. That’s why The Association hosts an annual ALS Drug Company Working Group that brings together representatives from pharmaceutical companies and academia to discuss how to move ALS research and therapy development forward.
Every May, The ALS Association joins the ALS community in celebrating ALS Awareness Month, a time to bring attention and understanding to this disease. As part of this year’s Awareness Month, we are happy to be launching the ALS Association Blog!
Early development of potential therapeutics is a major bottleneck in ALS therapy development. Eliminating this bottleneck is a significant opportunity for accelerating new treatments. That’s where the Neuro Collaborative comes in.
Javier Jara, Ph.D., is a Research Assistant Professor in Dr. Hande Ozdinler’s laboratory in the Department of Neurology at the Northwestern University Feinberg School of Medicine in Chicago. He was funded by The ALS Association’s Milton Safenowitz Post-Doctoral Fellowship for ALS Research from 2010-2012 and recently was awarded his own Investigator-Initiated grant by The Association.
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association's Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.