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 year at 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.
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.
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).
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.
The ALS Association today announced the election of Stephen Winthrop as Chair of The ALS Association Board of Trustees. Stephen was diagnosed with ALS in 2013 and joined the Board in 2015. He replaces Doug Butcher, who will remain a member of the Board.
Families living with ALS are faced with a whole host of everyday challenges that can become a burden over time. The ALS Association created the Care Connection program to provide support to meet families’ needs to ultimately alleviate stress. Learn more about this extraordinary program and all the help it delivers.
Today, we are happy to feature Dr. Nicholas Olney, this year’s recipient of the prestigious Clinical Research Training Fellowship in ALS Research Award given in partnership with the American Academy of Neurology (AAN). Dr. Olney is currently working on an ALS biomarker project aimed at developing clinical markers of disease progression, a major unmet need in ALS, at the University of California at San Francisco (UCSF) School of Medicine under the mentorship of Drs. Howard Rosen, Cathy Lomen-Hoerth and Bruce Miller.
Last month, Dr. Leonard Petrucelli at Mayo Clinic Jacksonville in Florida and colleagues reported discovering a new ALS biomarker that specifically detects a protein made by the C9orf72 expansion, the most common inherited cause of ALS. Their results are crucial to complement an upcoming clinical trial testing antisense drugs targeting the C9orf72 expansion. The ALS Association supported this study, including funding to bright, young scientists that significantly contributed to this project – past and current Milton Safenowitz Postdoctoral Fellows, Drs. Tania Gendron, Marka van Blitterswijk, Veronique Belzil, Mercedes Prudencio from the Mayo Clinic Jacksonville and Clinical Research Fellow, Dr. Lindsey Hayes from Johns Hopkins University. The paper with Drs. Tania Gendron, Jeannie Chew, Jeannette Stankowski and Lindsey Hayes as co-first authors, along with 78 contributing researchers, was featured on the Science Translational Medicine front cover of the March 29th issue, which is a great scientific honor.
More than 500 people have already registered for the 2017 National ALS Advocacy Conference and time is running out to sign up. This conference is an annual opportunity for our advocates – people living with ALS, their families, friends, doctors and researchers – to share the ALS story and let Members of Congress know the true nature of the disease and why it is important to take action immediately.