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Emory School of Medicine

ALS research in the time of COVID has been different – but we are continuing to work toward understanding the causes and drivers of ALS. We at the Emory ALS Center continue to be actively engaged in research projects that range from basic questions about the causes of ALS to clinical trials of new drugs to treat people with ALS. Please read below to learn more about our research program and projects. Though much of our “Wet lab” research has been on hold since March of 2020, our extensive ALS database and biobank allows us to continue to ask questions about the clinical features of disease and how that relates to protein markers in the blood and the brain, and what relationship these measures have to a person’s genetic makeup. In collaboration with investigators at the University of Massachusetts and the NIH, and funded by ALSA, Dr. Glass is working on generating a repository of whole genome sequences collected from ALS patients around the world. This will be a valuable collection of genetic information unprecedented in size and will be made available to any and all investigators who are studying any aspect of ALS. The Emory ALS Center has just been funded by the National Institutes of Health to investigate “Pathobiology Neurodegeneration in C9ORF72 Repeat Expansion”. This project, in collaboration with investigators at the Mayo Clinic, Johns Hopkins, and the Massachusetts General Hospital will use animal models and human tissues to identify causative factors in patients with this form of genetic ALS. We are well into the clinical trials of gene therapies for ALS patients carrying either the SOD1 or C9ORF72 genetic mutation. Dr. Glass actively collaborates with other ALS investigators around the world on multiple projects examining ALS genetics, immunology, neuropathology, and animal and cellular models of ALS. Dr. Glass also continues his work on discovering biomarkers of ALS, which necessitates the participation of PALS and CALS. We are collecting blood and spinal fluid samples from patients for our research. Family members and non-related adults are also important participants in our studies, serving as “Controls” that allow us to compare results between people living with and without ALS. Publications by Dr. Glass. Dr. Fournier is well into her 5-year research grant from the Veterans Administration to develop a new questionnaire to measure the progression of ALS. The first phase of the project is complete with creation and validation of the Rasch-Built Overall ALS Disability Scale, a new and improved tool for measuring the degree of disability in PALS. The ROADS is an improvement over the ALS Functional Rating Scale, as it is shown to be more reliable and is expected to be more responsive in capturing smaller changes in disability. It is hoped that this new scale will improve the efficiency of future ALS clinical trials. Ezana is a new graduate student working with Dr. Glass on the question of why ALS patients are so different in their clinical characteristics. Ezana has embarked on a project looking at genetic factors that may underlie this disease heterogeneity using DNA and cells generated from skin biopsy samples from patients with genetic ALS, but with varying clinical features. We at the Emory ALS Center understand the dire need for effective treatments for ALS. The only way to help develop new therapies for ALS is through rigorous scientific investigation.

Keywords: [“ALS”, “research”, “genetic”]
Source: https://med.emory.edu/departments/neurology/programs_centers/emory_als_center/research/index.html

New Law Sponsored by Senator Mayer Establishes ALS Research & Education Fund

The new law also creates a convenient way for New York State residents to donate to the fund directly through a check-off box on personal or corporate income tax forms. “I was inspired to sponsor this bill by my friend Pat Quinn who is an exemplary profile in courage while battling ALS and advocating for others affected by the disease. My hope is that new donations collected through this fund will contribute to breakthroughs in research that will finally shed light on causes and treatments for ALS,” said State Senator Shelley Mayer. “Thank you to Governor Andrew Cuomo for recognizing the importance of increased funding for ALS research. Thank you also to Democratic Conference Leader Andrea Stewart-Cousins and my Senate colleagues who unanimously supported this bill.” ALS, more commonly known as Lou Gehrig’s Disease, has been identified for over 150 years, but still no cause, treatment, or cure is known. The neurodegenerative disease affects motor neurons which send signals from the brain to muscles throughout the body. Those diagnosed with ALS are expected to die within two to five years after diagnosis. Donations collected through the ALS Education & Research Fund will be distributed annually to two New York State nonprofits devoted to ALS research and advocacy: the Greater New York ALS Association and the ALS Association Upstate New York Chapter. “The passing of this bill is another step in the right direction to defeat ALS. Thank you to the Governor for signing the bill today, but more importantly, thank you to Senator Shelley Mayer for making it all happen. She has been fighting by my side since the first time I met her. It means so much seeing her relentless pursuit of more ALS support. We will continue to fight this disease together,” said Pat Quinn, ALS fighter and Ice Bucket Challenge Co-Founder. “More than 5,000 Americans are diagnosed with ALS every year. I would like to thank the Governor and my colleagues in the Legislature for recognizing how vital additional funding is for ALS research and education. Tax check-offs have raised millions of dollars for important causes around New York State, and I am eager for people to have an opportunity to help fund ALS research,” said Assemblywoman Aileen Gunther. S.8582/A.398A was sponsored in the Assembly by Assemblywoman Aileen Gunther. “The ALS Association Greater New York Chapter is grateful for the leadership of Senator Mayer, Assemblywoman Gunther and Governor Cuomo on this important piece of legislation. Funding received from the ALS Tax Check-Off will assist the Chapter in providing critical support services to ALS patients and their families living in New York City, Long Island, Westchester, and the Lower Hudson Valley. We thank our partners and champions in state government and look forward to working together to find a cure for ALS,” said Kristen Cocoman, President & CEO of the ALS Association Greater New York Chapter. “The New York State Tax Return donation check off helps not only raise New Yorkers’ awareness of this under-recognized disease, it helps the Upstate New York Chapter provide critical programs and services to help improve the quality of life for individuals and their families coping with ALS,” said Elizabeth Krisanda, Executive Director of the ALS Association Upstate New York Chapter.

Keywords: [“ALS”, “new”, “York”]
Source: https://www.nysenate.gov/newsroom/press-releases/shelley-mayer/new-law-sponsored-senator-mayer-establishes-als-research
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