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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Make a Difference: Attend the 2018 National ALS Advocacy Conference

Each spring, hundreds of ALS Advocates from across the U.S. unite in Washington, D.C., to learn about the latest ALS research, network with each other, and visit Capitol Hill to share their stories with members of Congress and advocate for research and access to care.

Taking place May 13-15, at the J.W. Marriott in Washington, D.C., the 2018 National ALS Advocacy Conference will focus on The ALS Association mission pillars – Advocacy, Care Services, and Research. After a day and a half of education sessions, ALS Advocates will head to Capitol Hill on Tuesday, May 15 to make specific action requests of their Senators and Representatives.

You can register to attend this year’s National ALS Advocacy Conference here.

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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.

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Statement on DRAFT FDA Guidance for ALS Drug Development

On February 12, 2018, the FDA announced its DRAFT Amyotrophic Lateral  Sclerosis: Developing  Drugs for Treatment – Guidance for Industry. A copy of FDA’s draft guidance can be found here.

The ALS Association is carefully reviewing the FDA draft and will submit comments. In addition, the Association encourages interested persons to submit comments directly to the FDA. The deadline to submit comments is April 17, 2018 and further instructions on how to submit comments can be found here.

The FDA’s DRAFT guidance is informed by the ALS community’s patient-focused guidance, docketed with the FDA in November 2017. More than 100 individuals from throughout the ALS community worked together to develop the guidance, including people with ALS, caregivers, ALS organizations, the world’s leading clinicians and researchers, industry leaders, and representatives from CDC and the NIH.

It is important to restate that the ALS community’s patient-focused guidance purposely includes content that goes beyond what is typically found in an official FDA guidance. With the encouragement of the agency, the community’s guidance was designed to provide much broader and deeper input to the FDA on topics that inform their understanding of ALS and the community consensus on key therapy development topics.   

A finalized FDA guidance and the community’s inputs will work in tandem to provide greater clarity for researchers in academic institutions and pharmaceutical companies. The goal here is to increase the efficiency, predictability, and speed of the drug development process, including clinical trials, and to accelerate access to new therapies for ALS.

The ALS Association will continue to advocate for the most helpful FDA guidance and expand its array of projects to accelerate treatment to people with ALS.  


The New Tax Law and Charitable Giving

As the dust settles on the passage of the new tax law, you may be wondering how it will affect your charitable giving. Supporters of The ALS Association give for a variety of reasons, but the added benefit for many donors is the ability to take charitable deductions if they itemize deductions on their tax returns.

The new tax law will affect everyone differently, and many people are still working through what it may mean for their personal situation.

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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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Steve Gleason Enduring Voices Act is Permanent!

The Steve Gleason Enduring Voices Act is now law!

This morning, President Trump signed the Bipartisan Budget Act of 2018 (H.R. 1892), which included the Steve Gleason Enduring Voices Act. The Act will permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases.

Read our article from earlier this week for more details.

Photo credit: Ingfbruno – Own work, CC BY-SA 3.0,