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 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 Ice Bucket 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 Ice Bucket Challenge, we 34 Certified Treatment Centers of Excellence and there were no plans to increase that number. Today, we have 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 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.

Senate Passes 21st Century Cures Act, December 7th

Senate Passes 21st Century Cures Act

Yesterday, the Senate passed the 21st Century Cures Act, sending the groundbreaking legislation to President Obama’s desk for a signature. The new law will provide billions of dollars to help accelerate the discovery, development, and delivery of promising new treatments by funding research and streamlining the drug review process. Importantly, the bill also will help preserve access to complex rehab technologies (CRT) power wheelchair accessories.

The 21st Century Cures Act is groundbreaking legislation that has taken over two years of negotiations. Thank you to all of the ALS Advocates who wrote letters, made phone calls and spoke to legislators about the legislation. Because of your hard work, ALS Association priorities were included in the final legislation. Continue reading Senate Passes 21st Century Cures Act, December 7th

The ALS Association Invests More Than $1.9 Million to Discover Treatments for ALS

research news banner 2015

The ALS Association is pleased to announce five new Translational Research Advancing Therapy for ALS (TREAT ALS™) grant recipients to fund milestone driven amyotrophic lateral sclerosis (ALS) research. The TREAT ALS™ portfolio is a diverse collection of ALS research to find treatments and a cure for ALS. These awards include a TREAT ALS™ Drug Development Contract grant and ALS Association-Initiated grants totaling $1,950,340.

Continue reading The ALS Association Invests More Than $1.9 Million to Discover Treatments for ALS

The ALS Association Funds Five New Grants in the TREAT ALS™ Porfolio

March 2016

TREAT ALS™ Drug Development Contracts

Drug development contracts are milestone-driven awards designed to rapidly bring the most promising potential therapies closer to clinical trials. Many of the contracts are in partnership with industry. Academic-industry partnerships are invaluable to drive treatment approaches for ALS more rapidly to the clinic.

Continue reading The ALS Association Funds Five New Grants in the TREAT ALS™ Porfolio

Translational Research Advancing Therapy for ALS (TREAT ALS™) Drug Development Contract

Deadline for submission of Letter of Intent: March 21, 2016


Letter of Intent- March 21, 2016
Request to submit full application- April 12, 2016
Submission of full application- May 16, 2016
Notification of award- July 2016
Funding commences on receipt of all relevant signatures.

E-mail for queries.

Continue reading Translational Research Advancing Therapy for ALS (TREAT ALS™) Drug Development Contract

The ALS Association Invests up to $2.5 Million for New Proposals to the TREAT ALS™ Drug Development Contract Grant Program

The ALS Association announced the Translational Research Advancing Therapy for ALS (TREAT ALS™) Drug Development Contract grant program to fund milestone-driven research to develop new treatments for ALS. This program supports research from early target identification to preclinical research and early pilot clinical trials. The successful grants with the most developed plan will receive up to a $500,000 investment over a maximum two-year period.

Continue reading The ALS Association Invests up to $2.5 Million for New Proposals to the TREAT ALS™ Drug Development Contract Grant Program

The ALS Association Funds Five New Grants in Clinical Care Management and Data Collection

ALS Association-Initiated Grants
The ALS Association defined areas of specific focus for research and invited experts in their respective fields to submit proposals. The ALS Association convenes a review board to discuss proposals and makes selections based on the merits of each one. ALS Association-Initiated Grants include:

Robert Miller, M.D., Sutter West Bay Hospitals, ALS Forbes Norris MDA/ALS Research Center, San Francisco.
Topic: Establishing uniform methods of data collection in ALS centers that use Epic software for their electronic health record and documentation
Award: $100,000 over nine months

Overview: Electronic health record (EHR) systems are routinely used at ALS multidisciplinary clinics to document clinical visits. Sadly, important information sits in the unstructured notes that are not easily extractable or harmonizable across the centers. This project does what is needed for the disease instead of the medical centers, by creating a constant flow of information from patients, providers, labs and other resources to a single data center, which could provide valuable insights into our knowledge of ALS.

Epic is one of the leaders among EHR vendors worldwide. According to the investigators recent survey, most U.S. ALS centers use Epic as their institutional EHR system. Epic has advanced functionality that allows designing, creating and deploying custom forms that allow data to be shared across institutional boundaries. With this knowledge, the investigators have worked with Epic to design ALS-specific forms for ALS clinics. Epic has agreed to work with them to build and deploy these to all of their installations. This project will allow multiple ALS clinics to capture bedside information throughout the entire disease course for any patient attending the clinic. Information can be exported from Epic databases, aggregated and used to learn about disease outcomes and to provide information to clinics and patients that can improve care. In this project, the three centers California Pacific Medical Center (CPMC), University of Minnesota, and Massachusetts General Hospital will begin to develop methodology, regulatory controls, operating procedures and guidelines for deployment to additional centers going forward.

TREAT ALS™ Clinical Management Grants
The aim of the TREAT ALS™ Clinical Management Grant Program is to improve care of people living with ALS with a focus on clinical, psychological and/or social management of ALS. Examples of relevant clinical management studies for this mechanism include, but are not limited to: studies that address gaps in delivery of care; studies that explore and develop telemedicine for the care of individuals with ALS; psychological interventions in ALS to address the significant mental health issues facing ALS patients and caregivers; nutritional and respiratory interventions; development of novel endpoints for clinical trials; and studies to address the needs of caregivers. The newly funded TREAT ALS™ Clinical Management Grants include:

Orla Hardiman, M.D., Trinity College and Beaumont Hospital, Dublin; Miriam Galvin, Ph.D., Dublin City University, Dublin; Niall Pender, Ph.D., Trinity College and Beaumont Hospital, Dublin; and Tom Burke, Trinity College, Dublin.
Topic: Defining and addressing the complex needs of ALS caregivers
Award: $199,984 over two years

Overview: Thinking and behavioural changes occur in ALS and clinically these changes overlap with a dementia affecting the frontal lobes of the brain (Fronto-temporal Dementia). According to many population-based studies, cognitive difficulties and behavior changes occur in up to 40-50 percent of patients with ALS. The most commonly reported behavioural change in ALS patients is apathy, present in up to 60 percent of patients.

Thinking and behavior changes are significant factors that contribute to caregiver burden, and there is evolving evidence that caregivers’ psychological status may also influence the mental and physical outcome of patients. However, the presence of cognitive/behavioral changes in ALS patients is often under-recognized by healthcare professionals and the burden of care associated with these changes is not addressed.

The overall purpose of this study is to systematically investigate the consequences of cognitive and behavioral effects on caregiver burden in ALS. Investigators will achieve this by (1) interrogating the components of our existing datasets to identify the impact of cognitive and behavioral change on caregiver burden and (2) designing a study to provide a rational approach to enable self-management of burden and develop guidelines for health care professionals to recognize cognitive and behavioral change in ALS and the associated burden for caregivers.

Stephen Selkirk, M.D., Ph.D., and Broderick Flynn, R.N., Louis Stokes Cleveland VA Medical Center, Cleveland.
Topic: Utilizing Telehealth technologies to manage the ALS patient
Award: $58,320 over two years

Overview: Telemedicine refers to the use of telecommunication systems to support health care delivery. It is a perpetually evolving application of healthcare, mirroring advances in technology that allows patients to interact with healthcare providers with a “Skype-like” connection. This modality of healthcare delivery is well suited to ALS patients. First, it is well established that ALS patients who receive care from an ALS specialty clinic will survive longer, receive more appropriate care and have a higher quality of life. However, the number of ALS specialty clinics is limited and often are not in close proximity for many patients with ALS preventing access to this high level of care. Telemedicine would allow any patient, regardless of their location, access to ALS specialty centers. Secondly, as ALS progresses patients become disabled making travel to a providers’ locations difficult – if not impossible. The ability to interact with care providers without travel from home would allow for continued care and decreased burden on the patient and his/her family as the disease progresses.

Emily Plowman, Ph.D., University of Florida, Gainesville, Fla., and Clifton Gooch, M.D., University of South Florida, Tampa, Fla.
Topic: Impact of combined inspiratory/expiratory respiratory training in ALS
Award: $200,000 over two years

Overview: Breathing and swallowing impairments are highly prevalent in ALS and together account for 92 percent of disease mortality. Currently, no treatments significantly prolong these vital functions, and there exists an urgent need for the development of effective therapies in ALS. Preliminary data from the investigators laboratory indicate that a program of expiratory strength training had a positive effect on expiratory force generating abilities, airway protection and swallowing in ALS, and inspiratory strength training has been identified as a significant predictor of survival (Pinto, 2015). To date, no group has examined the impact of a potentially synergistic combined inspiratory/expiratory respiratory training program to target the vital functions of breathing, airway clearance and swallowing in ALS. The goal of this proposal is to extend their earlier works and investigate the effects of a 12-week combined inspiratory and expiratory strength-training program in early affected ALS patients. The hypothesis is that respiratory training will actively engage breathing and swallowing musculature and prolong the vital functions of breathing, airway protection and swallowing. Results will provide valuable insight into the potential role of respiratory training to improve the care of persons with ALS and address a critical gap in treatment delivery in ALS.

Zachary Simmons, M.D. and Andrew Geronimo, Ph.D., The Pennsylvania State University College of Medicine, Hershey, Pa.
Topic: New opportunities for patients with brain-computer interface communication
Award: $197,551 over two years

Overview: Multidisciplinary clinics prolong survival and improve quality of life for individuals with ALS. The promise of telemedicine is to expand the reach of these centers by making virtual medical care more accessible and at lower cost. With the recent establishment of an ALS telemedicine program at Penn State Hershey Medical Center, individuals who were previously underserved may experience real-time, face-to-face care through a secure web-based video interface. Those engaging in virtual clinic visits, however, may possess verbal communication limitations that prohibit effective communication via conventional means. This proposal is an expansion of the Hershey ALS telemedicine program, so that training, monitoring and communication with augmentative and alternative communication technologies can be facilitated through a telehealth interface. Rather than indirect communication from the patient through a caregiver, a telemedicine system with integrated eye tracking and brain-computer interface capabilities will facilitate direct interaction between the patient and the clinical care team. Furthermore, remote monitoring of these systems will allow for therapists to judge the efficacy of these devices, remotely adjust parameter settings and recommend alternative solutions outside of normal clinic visits.

For the press release click here.