Guest Post: What I Learned from Stephen Hawking

By Dr. Richard Bedlack

I woke up this morning to the terrible news that Stephen Hawking died. While I never met the man, and didn’t really understand all he was saying about black holes, I learned a lot from him about what is possible for people with ALS.

At his diagnosis, Hawking was reportedly told that he would only live a few years and that there was nothing that could be done for him.

He beat his prognosis by many decades. While he appeared to decline a lot in the beginning of his illness, his progression seemed to slow, or even stop in later years. His course opened my eyes to the idea that there can be marked variability between people with ALS, and even within a given patient at different times.

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Why Wednesday: Mike Maloney – A True Hero of Hope

(This is the first article in a five-part series highlighting the 2018 recipients of The ALS Association Heroes of Hope Awards.)

Mike Maloney is one of the reasons we provide care services to people living with ALS, advocate for legislation that greatly impacts the quality of life of those living with the disease, and fund research toward treatments and a cure for ALS.

At the 2018 Leadership Conference for The ALS Association last month, he was posthumously honored with a Heroes of Hope Award. His wife, Ellyn Maloney, accepted the award in his memory.

The ALS Association Upstate New York Chapter first came to know Mike in May 2013. He had been living with his ALS diagnosis for about a year and just shared the news with his closest friends.

Continue reading Why Wednesday: Mike Maloney – A True Hero of Hope

The Hollywood Reporter: ‘How Nanci Ryder’s ALS Fight Sparked a Medical Breakthrough’

The Hollywood Reporter recently published a great article about new discoveries toward a cure for ALS, thanks to contributions and support from Nanci Ryder, veteran talent publicist, and her friends and supporters. Nanci has bravely fought ALS since 2014, and has enlisted the support of such stars as Courteney Cox, Don Diamont, and Renee Zellweger.

“Team Nanci” has raised over $580,000 for The ALS Association through Walk to Defeat ALS events. (Kathy Shawver Maffei, a leader for Team Nanci, is a newly elected member of the board for The ALS Association Golden West Chapter.)

The Hollywood Reporter article by Dr. Justin Ichida – as told to Chris Gardner, a The Hollywood Reporter staff writer – describes the discoveries (and some of the science behind them) and credits not only Ryder’s fundraising and awareness efforts, but also federal funding from the Department of Defense’s (DoD) ALS Research Program (ALSRP) for making his research possible.

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Throwback Thursday: Duke, UNC Coaches United to Raise Awareness of ALS

In honor of Throwback Thursday, we’re taking it back to February 9, 2017, to an article titled, “Duke, UNC Coaches Unite to Raise Awareness of ALS.”

The men’s basketball coaching staffs of Duke University and the University of North Carolina (UNC) wore The ALS Association lapel pins on February 9, 2017, in honor of Jeff Capel, Jr., who had recently been diagnosed with ALS. Capel was the head coach at Old Dominion University (ODU) for seven seasons and also served as an assistant for the Charlotte Bobcats and the Philadelphia 76ers.

To read the article from last year, click here.

ALS Ice Bucket Challenge Year-End Update: Over $94 Million in Commitments Since 2014

In the summer of 2014, the ALS Ice Bucket Challenge inspired 17 million people to upload videos and raised $115 million for The ALS Association. Since then, The ALS Association has committed more than $94 million toward its mission, including over $82 million to fund research, and helped forge nine new global research collaborations.

“The Ice Bucket Challenge was a global phenomenon, thanks to the generosity of millions of people, resulting in a tremendous amount of awareness of the disease and spurring a huge increase in our research spending,” said Calaneet Balas, president and CEO of The ALS Association. “Since 2014, we’ve committed over $82 million to fund diverse, cutting-edge research, including over 150 projects in the last year alone. By its nature and design, research requires time, and people with ALS don’t have a lot of time. But we’ve seen exciting breakthroughs from the research we fund – including some that were considered high-risk.”

ALS Ice Bucket Challenge donations have helped lead to the discovery of four new ALS genes, including NEK1, one of the most common. In addition, scientists who are a part of the Neuro Collaborative, which was started with an initial investment of $5 million from ALS Ice Bucket Challenge donations, have developed antisense drugs targeting two of the most common ALS genes, C9orf72 and SOD1. Our investment in this innovative technology also translates to other neurodegenerative diseases, making the impact of ALS Ice Bucket Challenge donations even greater.

ALS Ice Bucket Challenge donations have also helped spur advancements in assistive technology to develop flexible, accessible devices to help people living with ALS better communicate to improve their quality of life. ALS Ice Bucket Challenge donations have also helped us increase the number of Certified and Recognized Treatment Centers of Excellence and the size of the grants to those centers.

Prior to the ALS Ice Bucket Challenge, we supported 34 Certified Treatment Centers of Excellence and had no immediate plans to increase that number. Today, we support 58 Certified centers, in addition to 20 Recognized Treatment Centers. (The primary difference between Certified and Recognized Treatment Centers is that Certified Centers conduct ALS research.)

To see our research accomplishments and highlights for the past year (2017), please click here. To see a specific list of all the projects and project descriptions we have funded since the ALS Ice Bucket Challenge, please click here.

“We fight for treatments and a cure for ALS every single day,” Balas said. “We are the largest private funder of ALS research and are currently funding research projects in eight countries. We are also helping ensure people with ALS receive multidisciplinary care that we know enhances and extends life. And we’re amplifying the voices of more than 16,000 ALS advocates to push for better public policies that can help us fight for treatments and a cure.”

The ALS Association is committed to transparency in how donor dollars are fueling efforts to find treatments and a cure for the disease. And we’re committed to maximizing all donations from the ALS Ice Bucket Challenge and beyond.

For more information about what’s happened since the ALS Ice Bucket Challenge, please visit We will continue to update this site.

Andrew Rea: The Celebrity Chef Behind the ALS Pepper Challenge

Andrew Rea, a New York-based chef, filmmaker, and host of the hugely popular YouTube cooking show “Binging with Babish,” was hit hard when his friend, Garmt van Soest, messaged him to say goodbye during his final days. On October 23, Garmt passed away from complications from ALS.

Andrew needed to honor Garmt in some way, and thought capitalizing on the trend of people recording themselves eating super spicy peppers might be the best place to start. On November 6, Andrew created the first ALS Pepper Challenge.

He says, “I thought, ‘Why don’t we put some purpose behind all this pain that we’re putting ourselves through?’ I hope I can raise funds and awareness for The ALS Association, a great organization doing important work researching the disease. More importantly, I want to help play a part in sharing Garmt’s message of strength, positivity, and love.”

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ALS Registry Meeting Prioritizes Recruitment and Retainment Strategies

On December 13-14, 2017, 52 people gathered in Charlotte, N.C., to discuss how to increase awareness and participation in the National ALS Registry, the only population-based registry in the country collecting information to help scientists learn more about who gets ALS and its causes. Researchers use the Registry in their studies to find possible treatments and a cure.

The ALS Association believes collaboration with all partners will intensify the momentum needed to advance the Registry. Attendees in last month’s meeting — people living with ALS and their family members, numerous representatives from The ALS Association chapters, members of the National ALS Registry Taskforce, and representatives from the Agency for Toxic Substances and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) – are all critical to the Registry’s success.

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