New Research Brings Help, Hope to People With ALS

ALS is a devastating disease with no cure.

But researchers are working to change that. The increased awareness and donations provided by events like the ALS Ice Bucket Challenge—and by people like you—are making a real difference in the pace of discoveries, bringing us ever closer to the end of ALS.

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This is an Exciting Time in ALS Research

At the largest-ever Drug Company Working Group meeting held in Boston in April, The ALS Association featured the first details of exciting new “antisense” target that may be relevant to most people with ALS, not just those with an inherited ALS gene. The meeting also featured reports from several companies that are forging ahead with novel approaches to ALS treatment. In addition, the meeting was the forum for the formal awarding of the Prize4Life $1 million Avi Kremer ALS Treatment Prize. Much of the work presented are direct results stemming from funding and academic-industry partnerships initiated by The ALS Association.

“With these many new treatments in development, this is an exciting time in ALS research” -Barb Newhouse, President and CEO of The ALS Association.

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Aquinnah Pharmaceuticals Partners with Two Major Pharmaceutical Companies Aimed at Moving Promising Compounds Forward

The biotechnology company, Aquinnah Pharmaceuticals is dedicated to identifying new therapeutic agents for ALS and Alzheimer’s disease, based on a new scientific approach of RNA binding proteins involved in neurodegenerative disease. Last week, Aquinnah announced a $10 million investment from two world leader pharmaceutical companies Pfizer, Inc. and AbbVie Inc. to support therapeutic development to treat ALS, Alzheimer’s disease and other neurodegenerative diseases. This adds to a previous $5 million investment by Takeda Pharmaceuticals in December 2015. The Association recently awarded Aquinnah two grants totaling approximately $500,000 (see below) under the Lawrence and Isabel Barnett Drug Development Program, designed to propel therapeutic targets into human clinical trials through building and fostering academic-industry partnerships.

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ALS Research Progress Showcased at 2017 AAN Conference

This year that the 69th Annual American Academy of Neurology Meeting in Boston, thousands of neuroscientists came together to share their research and collaborate. Here we report the latest ALS research findings presented at the meeting by distinguished researchers, who were chosen to speak based on scientific merit. Read more for exciting ALS updates from the meeting.

 

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Make a Difference This May

May is ALS Awareness Month!

Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.

But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:

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Featured Clinician Scientist: Dr. Sabrina Paganoni – Investigating Novel ALS Therapies

 

Today, we are pleased to feature ALS researcher Dr. Sabrina Paganoni from Massachusetts General Hospital and Spaulding Rehab Hospital. She is this year’s recipient of the Clinician Scientist Development Award in ALS Research given in partnership with the American Academy of Neurology (AAN). The award gives her the freedom to pursue multiple ALS clinical studies, including an exciting new trial testing inosine, and to continue to attend to people living with ALS in the clinic. Get to know this dedicated ALS researcher both in and out of the hospital.

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Sheila Essey Award Winner Profile: Dr. John Ravits Offers a Continuum of Care

Dr. John Ravits, Professor of Clinical Neurosciences and Head of the ALS Translational Research Program at the University of California, San Diego (UCSD) is a physician-scientist at the forefront of ALS thought and research of sporadic and familial ALS. Yesterday, at the 69th Annual American Academy of Neurology (AAN) Meeting in Boston, he was presented the prestigious 2017 Sheila Essey Award by Dick Essey, founder of the award named in honor of his wife Sheila who battled with ALS for ten years and died from the disease in 2004.

Over the course of his career, Dr. Ravits has emerged from the clinics where he cared for thousands of patients to formulate specific ideas about onset and progression of ALS and to take these ideas to create idealized models. His basic science research interests and contributions to science are far reaching from understanding the onset and progression of ALS in the body to exploring ALS neuropathology to functional genomics in motor neurons and more. Dr. Ravits also played an integral part in antisense oligonucleotide (ASO) therapy development for the most common genetic cause of ALS, the repeat expansion of the C9orf72 gene.

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