Last week, President Trump submitted his budget request to Congress. Included in the proposal are changes to funding for Medicaid, cuts to Social Security Disability Insurance (SSDI), cuts to the National Institutes of Health (NIH) and the complete defunding of the National ALS Registry at the Centers for Disease Control (CDC).
Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight.
There are many ways, both big and small, to raise ALS awareness. Some people have used their filmmaking or public speaking talents to craft compelling stories of those living with this disease. From TED talks to award-winning documentaries, these videos inspire, educate, challenge and entertain viewers, while celebrating the lives of people with ALS and the contributions they have made.
Thank you to the over 600 people that descended on Capitol Hill on Tuesday during The ALS Association's 2017 Advocacy Conference. So many advocates shared their stories to inspire their local legislators to support important ALS initiatives.
The ALS Association is at the forefront of the global research effort to find treatments and a cure for ALS. We believe that innovation and collaboration will be the key to winning this important fight. Only by coming together with others around the world who are experts in their fields will we make significant progress. We know collaboration leads to progress.
Modern technology makes it easier than ever for people get information about ALS. Unfortunately, people cannot learn about the disease through Apple’s popular digital assistant, Siri. The voice recognition program is an integrated part of all current Apple products and Siri reaches a huge number of people. For example, there are more than 80 million iPhone users in the U.S. alone.
This year, Jennifer Beckerman received the 2017 Tom Watson Award For Courage from The ALS Association Mid-America Chapter at their annual Night of Hope. Hear Jennifer’s story and how her beautiful, 16 year old daughter, Savannah, is her ultimate support.
One of the questions that people living with ALS often ask is – what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry (Registry) – in the newly launched National ALS Biorepository (Biorepository).
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.
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 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.
