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.
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
Aquinnah Pharmaceuticals, in partnership with researchers at Boston University, are targeting stress granules to design new therapies for amyotrophic lateral sclerosis (ALS). The goal is to advance promising new drug leads aimed at providing disease-modifying treatments for patients that will slow the clinical progression of this devastating disease.
One of the cornerstones of The ALS Association’s global research program is to fund milestone-driven projects to push research efforts more rapidly toward effective treatments and cures. The Association successfully accomplishes this is through fostering partnerships between academic laboratories and industry, and then funding them through The Association’s TREAT ALS™ Drug Development Contract program grants.
One great example of this type of collaboration is a partnership between Dr. Ben Wolozin, Professor of Pharmacology and Neurology at Boston University School of Medicine and Dr. Glenn Larsen, CEO of Aquinnah Pharmaceuticals based out of Cambridge, Mass. Dr. Wolozin also serves as Aquinnah Pharmaceutical’s Chief Scientific Officer.
Mallory Marrs is a freshman at Hanover College, located in southern Indiana. She is very involved in activities such as Dance Marathon, cross country, and she is the Editor in Chief for the Odyssey Online. She wrote this article in memory of her uncle, who passed away in 2006 after his battle with ALS, and is happy she could honor him in this way.
I decided to do a quick visit home overnight the other day, and I was packing up last-minute items. I was looking over my dresser to make sure I didn’t miss anything, then something red caught my eye. It took me a minute to realize what it was. It was my ALS Association bracelet, with the phrase “never give up” on it. I had to stop for a minute and hold it. I couldn’t think of the last time I wore it or seen it, but it popped up on my dresser as I was packing up to leave for school for a few weeks.
I am a big believer in signs; how objects are placed into our lives at a certain time for a certain reason. I fully believe this bracelet with my motto was placed on my dresser at this time for a reason. The last few weeks of college have been a challenge. I was faced with unexpected disappointments, stress from keeping up with new schoolwork, and the pressure to live up to expectations. While usually, I thrive under these circumstances, the past few weeks had not lived up to my personal expectations and had me feeling like my usual self. Continue reading A Thank You to ALS
William Gunn is currently the Director of Music at Plymouth Regional High School in New Hampshire where he directs the Concert Band, Jazz Band, Concert Choir, and Chamber Singers. William is a free-lance pianist and also sings regularly with the New Hampshire Master Chorale.
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.
In January, I commissioned another former student, a freshman music composition major at Ithaca College, to write a choral piece set to one of Jane’s poem. Her son was in chorus and band for his entire high school career, so I couldn’t think of a better way to honor her words by setting it to music. Jane’s sisters would often tell me that she loved watching videos of him in the concerts. In conjunction with this commission, the entire choir has teamed with The ALS Association of Northern New England to raise money and awareness for ALS throughout the semester. Continue reading Raising Money and Awareness Through Music