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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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.

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Photo credit: Ingfbruno – Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=27510444

Steve Gleason Enduring Voices Act Moves Through House, Heads to Senate

The Steve Gleason Enduring Voices Act (S. 1132 and H.R. 2465), which would permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases, was included in the government funding package approved by the U.S. House of Representatives last night.

Under the leadership of Steve Gleason, a former New Orleans Saints player living with ALS, and Team Gleason, this bipartisan legislation was introduced by leading sponsors Sen. Bill Cassidy, M.D. (R-LA) and Sen. Amy Klobuchar (D-MN) in the Senate and Rep. Cathy McMorris Rodgers (R-WA) and Rep. John Larson (D-CT) in the House, in conjunction with The ALS Association’s National ALS Advocacy Conference in May 2017.

“ALS is a devastating disease that often robs people of the ability to communicate with their loved ones and the health care providers who care for them,” said Calaneet Balas, president and CEO of The ALS Association. “On behalf of people living with ALS, we thank Steve Gleason for his leadership on this issue and applaud Republicans and Democrats for coming together to pass this bipartisan legislation. And, of course, we were proud to play our part in advocating for it.”

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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 ALSA.org/IBC. 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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2017’s BIGGEST Successes by our ALS Advocate Community

We bring the ALS community together to speak with one voice to increase awareness, advocate for research funding, and educate legislators – impacting thousands of people with ALS and their families. This advances our mission to discover treatments and a cure, and to serve, advocate for, and empower people living with ALS to live their lives to the fullest.

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