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.
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.
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 night, WCVB, the Boston ABC affiliate, featured a half-hour show called “Unlocking ALS,” highlighting all the great work coming out of the Boston area in the fight against ALS. The show did a wonderful job covering all the progress that has occurred since the ALS Ice Bucket Challenge (ALS IBC), an organic online movement that catapulted ALS into the spotlight while raising $220 million worldwide.
The Association is pleased to continue on the tradition of supporting bright, young scientists in ALS research through the Milton Safenowitz Postdoctoral Fellowship Program. This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. In this series, we highlight the dedication and unique contribution each fellow makes to ALS research. Today, we feature Dr. Amanda Gleixner from the University of Pittsburgh.
The Association is pleased to continue on the tradition of supporting bright, young scientists in ALS research through the Milton Safenowitz Postdoctoral Fellowship Program. This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. In this series, we highlight the dedication and unique contribution each fellow makes to ALS research. Today, we feature Dr. Vicente Valenzuela from University of Chile.
This week, former San Francisco 49ers receiver Dwight Clark announced he has ALS. He joins other NFL football greats including Steve Gleason, Tim Shaw, Kevin Turner, O.J. Brigance, and others, who have been diagnosed with ALS following their pro football careers. These announcements have brought much attention to the connection between football and traumatic brain injury (TBI) and the question of whether such injuries from football can lead to ALS or chronic traumatic encephalopathy (CTE). Here, we highlight some research behind the possible connection.
In late-February 2017, The ALS Association announced the release of 11 new Living with ALS resource guides on our website, www.alsa.org. The guides were designed to inform and educate people about ALS in a comprehensive and easily understood format, addressing many of the common concerns and issues that face people living with ALS.
Former San Francisco 49ers receiver Dwight Clark, best known for his leaping catch in the end zone to help the 49ers win the 1982 NFC Championship game, announced on Sunday that he has ALS. Clark wrote a letter explaining his story.