Atlanta (CNN) To raise awareness for ALS, Chris Kennedy poured a bucket of ice water over his head. A year ago Wednesday, he posted the video to his social network. 
 
 Quite possibly, you even drenched yourself. 
 
 More than 17 million people participated in the Ice Bucket Challenge to support ALS and other causes. 
 
 Nationally, 2.5 million people donated $115 million to the ALS Association. The organization says the event was probably the single largest episode of giving outside of a disaster or emergency. 
 
 So, whatever happened to all that money? 
 
 Bucket #1: $77 million for 'research' 
 
 Of the total money raised, 67% goes in the bucket marked "research" to find a treatment -- or even a cure -- for ALS. 
 
 Currently, there's no cure and only one drug that "modestly extends survival," according to the ALS Association. As nerve cells in the brain and spinal cord die, a patient's muscles, which are no longer connected to living nerves, start to waste away. On average, within two to five years after an ALS diagnosis, patients lose their ability to breathe and they die. 
 
 The ALS Association is spreading the $77 million to many different research projects. 
 
 For example, $10.5 million is going to a group that's testing whether a medication used to stabilize heart rhythms in cardiac patients can also stabilize nerve cells in ALS patients. It's also testing whether a drug can reduce inflamed nerve tissues, and is using MRI scans to study inflammation in the brains of sick patients. 
 
 Another initiative: $5 million is going to the Neurocollaborative , which is creating stem cell lines from ALS patients that will mimic their own nerve cells. 
 
 "We can start seeing why they're dying. We can start putting drugs on them to start seeing if we can slow them down," said Clive Svendsen of the Neurocollaborative. "It's a bit like having an avatar of yourself in the petri dish." 
 
 The ALS Association is also budgeting $1 million to Project MinE and $2.5 million to the New York Genome Center to map the genetic code of ALS patients. 
 
 "Right now we have very few things that we can do for these patients to keep them alive longer," said Dr. Jonathan Glass of Project MinE. "If we can take a disease that kills you in three years and make it a chronic disease that you live with for 10 or 15 years, I think we've done something very big." 
 
 Blood, brain and spinal fluids from ALS patients may also contain clues. Altered proteins, for example, could allow doctors to create a new fluid test to diagnose ALS, which could get patients enrolled in clinical trials earlier and possibly lead to better treatments. 
 
 To hunt for these "biomarkers," the ALS Association is budgeting $1.4 million to the Barrow Neurological Institute, Iron Horse Diagnostics, and the CreATe consortium to collect and study these types of fluids. 
 
 Another $1.5 million is going to drug maker Cytokinetics to collect blood from ALS patients over time. The fluid's being collected as part of an advanced clinical trial investigating whether a drug can help patients breathe, but it may yield other discoveries when independent researchers also get a chance to study it. 
 
 "People will just be able to apply and use the information in the fluids," said Dr. Jeremy Shefner, the trial's lead investigator. "That is a first for large companies -- to actually, as part of their trial, include a component that is publicly available and is a resource for a disease-based community." 
 
 Tuesday, the ALS Association announced 58 winners of smaller grants. These researchers from the U.S. and abroad will each receive between $40,000 and $500,000. 
 
 Bucket #2: $23 million for 'patient and community services' 
 
 The ALS Association is budgeting $8.5 million to its 39 local ALS chapters . The initiatives vary, from providing iPads and head-mounted laser pointers to help patients communicate, to supplying canes, wheelchairs and ramps to help them get around. 
 
 With this money, one chapter in St. Louis has doubled the IV nutrition it supplies to patients who can't swallow. Another chapter , in western Pennsylvania, is providing in-home training on caring for sick family members and grief counseling when patients pass away. 
 
 The ALS Association is also budgeting $2.7 million for 48 ALS treatment centers it's certified as the best in the field. 
 
 Bucket #3: $10 million for 'public and professional education' 
 
 This money goes toward a variety of initiatives to educate the public about ALS and help doctors and researchers learn more about how best to fight for ALS patients. 
 
 Among the projects announced so far, the ALS Association is budgeting $500,000 to create guidance for companies developing ALS drugs on how to remove uncertainty and risk associated with the Food and Drug Administration's approval process. 
 
 Bucket #4: $3 million for 'fund-raising' 
 
 The ALS Association says it will spend $3 million on things like data analysis and communication initiatives to maintain the support of donors it picked up during the Ice Bucket Challenge. 
 
 Bucket #5: $2 million for 'external processing fees' 
 
 It's cost the ALS Association $2 million just to pay for things like running all those credit and debit card donations. It also got zapped with website overage charges since so many people visited. 
 
 Phil Buchanan, president of the Center for Effective Philanthropy , says the organization's transparency should be applauded. 
 
 "I had kind of feared at the time that there would be a lot of pressure on them to spend the money quickly," said Buchanan. "But that can actually lead to money that's not well spent." 
 
 So, will everybody get wet and cold again? 
 
 "Let's keep it up this August and every August until there's a cure," proclaims a new promo on its website 
 
 That's because while $115 million may sound like a lot of money, it may in fact not be. 
 
 "By some estimates it takes about a billion dollars to make a new therapy," said Dr. Steven Finkbeiner of the Neurocollaborative. 
 
 Buchanan said this summer will determine whether the ALS Ice Bucket Challenge was a novelty or a repeatable tradition. 
 
 "There are all kinds of sort of bizarre traditions in societies, and this strikes me as, potentially, a more useful one than many others if it can raise that kind of money," he said. 
 
 His only worry: that donors will pay attention only to diseases with the cleverest social media marketing campaigns. 
 
 "Obviously there are a lot of other diseases that devastate peoples' lives," he said. "My hope would be that they get the resources they need for research as well." ||||| ALS Ice Bucket Challenge Commitments 
 
 The ALS Ice Bucket Challenge was a tremendous event in our Association’s history, raising $115 million in the summer of 2014. Not only did it bring awareness to this devastating disease, it importantly spurred a huge increase in our research budget. Since the IBC, we have committed over $96.4 million toward our mission, including over $84 million in research projects. 
 
 The ALS Association is committed to transparency in how donor dollars are helping to fuel efforts to find treatments and a cure for the disease. Below, you will find links and dollar figures associated with all of the projects and initiatives announced by The ALS Association that we have committed to fund using money raised during the 2014 ALS Ice Bucket Challenge. 
 
 Along with receiving tremendous help from volunteers, we are committed to maximizing all donations from the Ice Bucket Challenge and beyond by partnering with other organizations to fund the most promising ALS research all over the world. 
 
 These figures will be updated periodically as new commitments are added in the future. For questions, please contact inquiries@alsa-national.org. 
 
 For more information about our premier global research program, check out our research toolkit here. 
 
 
 
 August 2014 to Present Spending 
 
 Patient and Community Services 
 
 Grants to Treatment Centers - $3,315,000 
 
 Community and Support Grants - $8,500,000 
 
 Public and Professional Education 
 
 Regulatory Guidance to Speed Drug Development - $500,000 
 
 Research 
 
 Biogen, The ALS Association and Columbia University Medical Center Collaborate to Drive Understanding of Genetic Influence in ALS - $3.5 million 
 
 ALS Association and Target ALS to Expand Tissue Core for ALS Research - $1,392,668 
 
 ALS Association and Target ALS to Bring Whole Genome Sequencing to Postmortem Tissue Analysis - $2,500,000 
 
 The ALS Association and CReATe Consortium Announce Biomarker Discovery and Validation Projects - $500,000 and $50,000 
 
 Assistive Technology Challenge to Improve Communication for People with ALS - $500,000 
 
 The ALS Association Funds $1.3 Million in New Grants to Advance ALS Research - $1.3 million 
 
 Neuro Collaborative Partner Gladstone Institutes Forms New Collaboration with Biogen In ALS Research - $5 million 
 
 Grants in Clinical Care Management and Data Collection - $655,855 and $100,000 
 
 Grand Challenge to Develop a TDP43 Biomarker - $1 million 
 
 $2.5 Million for New Proposals to the TREAT ALS™ Drug Development Contract Grant Program - $2.5 million 
 
 TREAT ALS™ Drug Development Contract grant and ALS Association-Initiated grants - $1.9 million 
 
 The ALS Association Awards Origent Data Sciences a Grant to Enable a Research Partnership with Cytokinetics - $497,433 
 
 Professor Ammar Al-Chalabi Receives the 2016 Sheila Essey Award for ALS Research - $50,000 
 
 miRagen Therapeutics Receives ALS Association Grant to Advance the Development of MRG-107 - $424,725 
 
 NeuroLINCS Program - $2.5 million 
 
 ALS ACT - $10,500,000 
 
 New York Genome Center - $2,500,000 
 
 Neurocollaborative - $5,000,000 
 
 Project Mine - $1,000,000 
 
 Clinical Management Grant - $50,000 
 
 Clinical Research Training Fellow - $86,667 
 
 Biomarker Discovery and Validation Projects - $1,199,841 
 
 Biomarker Research Collaboration in Conjunction with Cytokinetics, Inc. Phase 3 Trial - $1,500,000 
 
 2015 Annual Research Awards - $11,621,638 
 
 Amylyx Pharmaceuticals - $734,350 
 
 TREAT ALS™ NEALS Clinical Trial Network - $2,621,821 
 
 Expand NeuroBANK - $1,679,091 
 
 ALS Association 2016 Multi-Year Investigator Initiated Grant Awards - $2,934,017 
 
 ALS Association 2016 Starter Grant Awards - $425,000 
 
 ALS ONE Massachusetts ALS Partnership (MAP) - $2 million 
 
 The ALS Association Funds Additional Grants in fall 2016 - $735,000 
 
 RNS60 Trial with Biomarkers - $500,000 
 
 Assistive Technology Challenge - $400,000 
 
 Additional Funding to Project MinE U.S. - $671,385 
 
 New Lawrence and Isabel Barnett Drug Development Program Awards - $998,500 
 
 New Milton Safenowitz Postdoctoral Fellows – Class of 2016 - $600,000 
 
 Biomarker Grand Challenge Award Winner - $499,966 
 
 2017 Sheila Essey Award winner - $50,000 
 
 2017 Clinical Research Fellowships - $370,000 
 
 ALS Online Genetics Database (ALSoD) Update - $150,000 
 
 Additional Funding to the Neuro Collaborative - $2,000,000 
 
 ALS Association 2017 Multi-Year Investigator-Initiated Grant Awards - $3,850,000 
 
 ALS Association 2017 Starter Grant Awards - $500,000 
 
 New Milton Safenowitz Postdoctoral Fellows: Class of 2017 - $500,000 
 
 2017 Clinical Management Grants - $534,392 
 
 2017 Lawrence and Isabel Barnett Drug Development Program Awards - $1,100,000 
 
 2017 Strategic Initiatives - $2,713,512 
 
 Grants to Treatment Centers - $3,315,000 
 
 The ALS Association and its network of chapters currently partner with 58 ALS Association Certified Treatment Centers of Excellence across the United States. Multiple studies have shown the value to a person living with ALS of attending a multidisciplinary clinic, including longer survival, increased quality of life, and improved access to potential therapies. One of the requirements in achieving certification through The ALS Association is for the institution to be actively involved in ALS-related research and to provide information to people living with the disease on research outside of their institution. Participation in clinical trials is imperative to the research process to find treatments for the disease. ALS Ice Bucket Challenge donations have enabled the Association to increase the number of centers and the size of its annual grants to the centers from the previously budgeted $12,500 to $25,000 per center. The ALS Association was also able to begin providing $5,000 annual grants to a number of its Recognized Treatment Centers of Excellence. 
 
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 Community Support Grants - $8,500,000 
 
 The ALS Association has 39 chapters in communities across the country that are providing care and support to people living with ALS. The ALS Association gave $8.5 million in funding to chapters to augment local programs and services to people living with ALS. Chapters have been able to accomplish the following: restock and expand equipment loan closets; expand services into Idaho and Utah; launch a telemedicine program to help home-bound patients; and increase patient access to care. Other stories of how chapters are making a difference can be found here. 
 
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 Regulatory Guidance to Speed Drug Development - $500,000 
 
 Organizations involved in two other neurological diseases (Alzheimer’s and Duchenne Muscular Dystrophy) have seen great benefits in working to develop guidance for companies to help them navigate the regulatory pathway for approval of effective therapies. As announced in the press release in October 2014, the enactment of the patient-focused drug development elements of the Food and Drug Administration Safety and Innovation Act (FDASIA) presents a unique opportunity for The ALS Association to help expedite drug development by developing similar guidance for ALS. No such guidance exists today for ALS, which creates uncertainty and risk for what is already a difficult and costly process. By developing this guidance, The ALS Association will be able to build on and strengthen its engagement with the FDA, industry and people with ALS about drug development as a regulatory process, which will reduce obstacles that can slow and limit innovation and access to effective treatments. 
 
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 Biogen, The ALS Association and Columbia University Medical Center Collaborate to Drive Understanding of Genetic Influence in ALS - $3.5 million 
 
 In August 2015, The ALS Association and Columbia University Medical Center (CUMC) announced a collaboration to better understand the differences and commonalities in the ALS disease process and how genes influence the clinical features of the disease. The project, “Genomic Translation for ALS Clinical care” (GTAC), involves a combination of next generation genetic sequencing and detailed clinical phenotyping in 1500 people with ALS. The goal of the project is to provide a basis for the development of precision medicine, or more individually tailored therapies for ALS 
 
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 ALS Association and Target ALS to Expand Tissue Core for ALS Research - $1,392,668 
 
 In September 2015, The ALS Association and Target ALS announced the launch of a new collaborative effort to expand the collection of biofluids from people with ALS, to be used for research to better understand the disease and ultimately develop new treatments. The ALS Association is investing $1,392,668 over 38 months. Funding from The ALS Association will allow pre-mortem biofluids (serum, plasma, and cerebrospinal fluid) to be collected and stored at the sites that comprise the Target ALS Postmortem Tissue Core at Barrow Neurological Institute/Saint Joseph’s Hospital in Phoenix, Columbia University in New York, Georgetown University in Washington D.C., Johns Hopkins University in Baltimore, and University of California at San Diego. Detailed genetic analysis will be performed on all these cases at The New York Genome Center, all the data will be linked, and all of the samples and data will be made available for researchers around the world. 
 
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 ALS Association and Target ALS to Bring Whole Genome Sequencing to Postmortem Tissue Analysis - $2,500,000 
 
 The ALS Association is pleased to announce the launch of a new collaborative effort with TARGET ALS to perform whole genome sequencing from people who have died from ALS, to be used for research to better understand the disease and ultimately develop new treatments. Funding from The ALS Association and the Tow Foundation will be used by The New York Genome Center to determine the entire genetic sequence of people with ALS who have elected to donate their tissues after death to the Target ALS Postmortem Tissue Core at Barrow Neurological Institute/Saint Joseph’s Hospital in Phoenix, Columbia University in New York, Georgetown University in Washington D.C., Johns Hopkins University in Baltimore and University of California at San Diego. 
 
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 The ALS Association and CReATe Consortium Announce Biomarker Discovery and Validation Projects - $500,000 and $50,000 
 
 In September 2015, The ALS Association and the CReATe Consortium announced the selection for funding of two new projects that will advance the discovery and validation of biomarkers relevant to ALS therapy development. 
 
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 Assistive Technology Challenge to Improve Communication for People with ALS - $500,000 
 
 In October 2015, The ALS Association, in partnership with Prize4Life, announced The ALS Assistive Technology Challenge to revolutionize communication technology solutions for people living with ALS. 
 
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 The ALS Association Funds $1.3 Million in New Grants to Advance ALS Research - $1.3 million 
 
 In December 2015, The ALS Association awarded $1.3 million in ALS Association-Initiated grants, Investigator-Initiated grants, and Milton Safenowitz Postdoctoral Fellowships grants. 
 
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 Neuro Collaborative Partner Gladstone Institutes Forms New Collaboration with Biogen in ALS Research - $5 million 
 
 In January 2016, The ALS Association announced a new collaboration between the Gladstone Institutes in San Francisco, which is a member of The Association-funded Neuro Collaborative and the biotechnology company Biogen in Cambridge, Mass., to discover novel drug targets for the treatment of amyotrophic lateral sclerosis (ALS). 
 
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 Grants in Clinical Care Management and Data Collection - $655,855 and $100,000 
 
 In February 2016, The ALS Association announced its support for four new clinical management grants that will address the gaps in amyotrophic lateral sclerosis (ALS) clinical care whose funding collectively totals to $655,855; and one new ALS Association-Initiated grant awardee whose project is to streamline data collection at ALS clinics for funding of $100,000. 
 
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 Grand Challenge to Develop a TDP43 Biomarker - $1 million 
 
 In February 2016, The ALS Association, in partnership with ALS Finding a Cure, announced the Grand Challenge to generate a biomarker to track TDP43 aggregation. The successful team(s) with the most developed plan will receive up to a $1 million investment. 
 
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 TREAT ALS™ Drug Development Contract Grants - $2.5 million 
 
 In February 2016, 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. 
 
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 TREAT ALS™ Drug Development Contract grant and ALS Association-Initiated grants - $1.9 million 
 
 In March 2016, The ALS Association announced five new Translational Research Advancing Therapy for ALS (TREAT ALS™) grant recipients to fund milestone driven research. These awards include a TREAT ALS™ Drug Development Contract grant and ALS Association-Initiated grants. 
 
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 Origent Data Sciences Grant to Enable a Research Partnership with Cytokinetics -$497,433 
 
 The ALS Association announced the awarding of an ALS Association-Initiated Grant to David Ennist, Ph.D., M.B.A, Chief Scientific Officer of Origent Data Sciences, Inc. based in Vienna, Virginia, for $497,433 over 34 months that will enable a research partnership with Cytokinetics Inc. (Nasdaq: CYTK) to improve clinical trial design. This collaboration will refine and prospectively validate an Origent computer model to predict the course of ALS disease progression leveraging data from Cytokinetics’ clinical trials of tirasemtiv, the first of its kind in a clinical trial setting. 
 
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 2016 Sheila Essey Award for ALS Research - $50,000 
 
 In April 2016, The Association and the American Academy of Neurology (AAN) awarded Professor Ammar Al-Chalabi with the 2016 Sheila Essey Award at the American Academy of Neurology’s 68th Annual Meeting in Vancouver, Canada. 
 
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 miRagen Therapeutics Receives ALS Association Grant to Advance the Development of MRG - $424,725 
 
 In June 2016, miRagen Therapeutics, Inc., a clinical-stage biopharmaceutical company developing innovative microRNA-based therapeutics and The ALS Association announced that miRagen has received the first installment of a Translational Research Advancing Therapy for ALS (TREAT ALS™) grant to advance the development of MRG-107, a synthetic microRNA antagonist (LNA antimiR®) of microRNA-155 that is effective in pre-clinical models of amyotrophic lateral sclerosis (ALS). 
 
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 NeuroLINCS Program - $2.5 million 
 
 The ALS Association is pleased to work in partnership with the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) to support NeuroLINCS, a collaborative effort among multiple research groups with expertise in induced pluripotent stem cell (iPSC) technology, disease modeling, OMICs and computational biology that is focused on gaining a deeper understanding of neurons and the causes of neurological diseases. The ALS Association contribution to NeuroLINCS is a $2.5 million commitment in partnership with the Greater Philadelphia Chapter over a five-year period to extend the current activities NeuroLINCS, which is one of six National Institute of Health (NIH) Library of Integrated Network-based Cellular Signature (LINCS) centers. 
 
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 ALS ACT - $10,500,000 
 
 In October 2014, The ALS Association committed a total of $10 million to ALS ACT, a novel academic-foundation-industry partnership to accelerate treatments for people living with ALS. (The Association put in an additional $500,000 after this initial commitment was made in order to fund one additional clinical trial.) In partnership with the recently formed The ALS Finding a Cure Team, composed of researchers from General Electric (GE) Healthcare and four academic Northeast ALS Consortium (NEALS) sites, ALS ACT will enact a multi-pronged approach to expediting clinical trials in ALS. The ALS Association’s funds are being matched by The ALS Finding a Cure Foundation, for a total of $20 million. The projects below have been peer reviewed and approved, and represent commitments from both organizations: 
 
 Alex Sherman, Merit Cudkowicz, M.D., Massachusetts General Hospital, $650,000 
 
 NeuroBANK as an Accelerated Clinical Research Environment: Development, Deployment and Services to ALS Research Community 
 
 
 
 Successful implementation of NeuroBANK™ will allow for a standardized patient-centric approach to clinical research in ALS with information linked across studies, locations and modalities. Standard Common Data Elements, standard operating procedures and GUID technology will lead to accelerated studies' review, approval, deployment and patient enrollment 
 
 Clive Svendsen, Ph.D., Cedars-Sinai, $1,913,025 
 
 Inflammatory Biomarkers, Stem Cells and DNA in people with ALS 
 
 The goal of this project is to identify biomarkers of ALS that will gives us clues to disease mechanisms and help us identify targets for ALS therapy development. Specifically, we are planning to collect blood samples and skin biopsies from 50 people with ALS and 50 healthy volunteers. We will then use the blood samples to identify inflammatory markers of ALS and perform detailed DNA analysis. The skin biopsies will be used to generate stem cells from people with ALS and compare them to the stem cells from healthy volunteers. At the end of this project, we will identify inflammatory signatures of ALS and new targets and tools for drug development. 
 
 Clive Svendsen, Ph.D., Cedars-Sinai (in partnership with General Electric), $268,384 
 
 Application of MultiOmyx to iPSC Models of ALS 
 
 Induced pluripotent stem cell technology (iPSC) holds great promise for accelerating our understanding of the molecular mechanisms and pathways leading to motor neuron degeneration in ALS. In vitro cellular model systems generated from patient-derived iPSC lines can recapitulate many aspects of in vivo cellular pathology, and beyond basic disease research may serve as a powerful test bed to screen potential therapies. Therapeutic screening on iPSC-derived models will likely be complimentary to, and in some aspects superior to, other approaches including animal models in terms of human-predictivity and speed. 
 
 GE has developed a unique technology platform allowing the in vitro analysis of cells and tissues to an extent not previously possible (MultiOmyx, or “MO”). An iterative labeling process allows repeated immunocytochemical visualization of 60 or more protein markers in a single sample, as well as RNA and DNA. Precision hardware and custom software for imaging and analytics enables extensive characterization of single cell structure and function as well as relationships with neighboring cells and environment. Application of this technology to ALS iPSC systems is likely to advance the utility of these models and provide new insights into neurodegenerative pathways and mechanisms. 
 
 Clive Svendsen, Ph.D., Cedars-Sinai (in partnership with General Electric), $389,643 
 
 Using Novel Imaging Agents as a Biomarker for ALS 
 
 Assessing the progression of ALS in both animal models and the human condition would provide the ideal biomarker for testing novel compounds rapidly and efficiently. However, while MRI and other imaging modalities exist they have not been fine tuned for this neurological condition. Our rational is that through better imaging of disease progression in ALS within individual patients, drug therapy throughput and success will be increased. 
 
 We have just completed an extensive study mapping the exact progression of disease in the G93A rat model of familial ALS (fALS). Remarkably, this animal model of ALS reproduces many aspects of the disease including stochastic loss of motor neurons that could start in either cervical (20%) or lumbar (80%) regions of the spinal cord - mirroring the situation in patients. 
 
 GE Global Research has developed a novel superparamagnetic iron oxide (SPIO) nanoparticle for MR imaging of neuroinflammation. The agent was shown to be efficacious in brain and spinal cord imaging of acute neuroinflammation in an experimental autoimmune encephalomyelitis (EAE) model in the rat, with MR signal correlated with macrophages present within the CNS. 
 
 James Berry, M.D., Massachusetts General Hospital, $1,000,000 
 
 Infrastructure Improvement and Biofluid Collection Protocols for the Expansion of the NEALS Biorepository 
 
 The exact cause of amyotrophic lateral sclerosis remains unknown, and there are no tests to diagnose the disease or follow its progression. Such tests, known as biomarkers, would be invaluable to speed the development of novel therapies for ALS. In recent years, ALS scientists have begun to identify promising potential biomarkers in the blood and spinal fluid of people with the disease. The next step to build on these discoveries, in many cases, is to test larger numbers of biofluid samples to confirm the findings. 
 
 The Northeast ALS Consortium (NEALS) biorepository is a collection of biological samples, including blood and spinal fluid obtained from people with ALS that was created to be a resource for scientists conducting research in ALS. This project will allow us to upgrade the NEALS biorepository infrastructure, including updating the computer systems, expanding the number of sample freezers, and revising the standard operating procedures for the repository. The project also supports two efforts to expand the biorepository by collecting new blood and spinal fluid samples from people with ALS. This will ensure the NEALS biorepository remains a vital resource to the ALS scientific community. 
 
 Robert Brown, University of Massachusetts, $2,500,000 
 
 Development of AAV-Mediated SOD1 Gene Silencing Therapy in ALS 
 
 About 10 percent of ALS cases are familial. Most of the known genetic defects in familial ALS act by triggering one or more toxic processes that impair the viability of motor neurons, leading to motor neuron death. This project will use viruses to introduce reagents into the brain and spinal cord that block the mutant genes from triggering toxicity. This is accomplished by turning off the activity of those genes using new technologies for so-called “gene silencing.” The viruses are used to penetrate the blood-brain barrier to deliver the gene silencing reagents, which then inactivate the genes in question. This technology will be tested first in cases of ALS arising from mutations in well-defined ALS genes (e.g. SOD1 and C9orf72). This project is intended to take the gene silencing all the way to a pilot human trial. We are hopeful that in the long term these studies will lead to a general platform or method for treating other types of familial ALS and potentially also some cases of non-familial ALS. 
 
 Nazem Atassi, M.D., Massachusetts General Hospital (in partnership with General Electric), $3,929,181 
 
 TRACK ALS 
 
 This is collaborative project between industry, academia, the Leandro P Rizzuto (ALS Finding a Cure (ALSFAC)) Foundation and The ALS Association. The overall goal of this project is to identify imaging markers of ALS that can be used to accelerate ALS diagnostic timelines and the pace of ALS drug discovery. This project will focus on studying the role of brain inflammation in people with ALS. 
 
 In this project we plan to use innovative MRI and positron emission tomography (PET) tracer (contrast) that will show us the location and degree of nerve damage and brain inflammation in people with ALS. We plan to compare MRI signals between 50 people with ALS and 50 healthy volunteers and to study these MRI signals over time in relationship with ALS clinical presentation and disease progression. In a subgroup of patients, we plan to compare brain inflammation between 20 people with ALS and 20 healthy volunteers and to study brain inflammation over time in relationship with ALS clinical presentation and disease progression. 
 
 At the end of this project, we will identify the imaging inflammatory signature of ALS as a potential tool for early diagnosis and quick read out of drug efficacy in people with ALS. 
 
 Stan Appel, M.D., Methodist Neurological Institute, $2,270,585 
 
 Pilot Trial of the Safety and Tolerability of Expanded Autologous Regulatory T Cells Administered by Intravenous Infusion in People with ALS 
 
 The purpose of this study is to isolate T regulatory (Treg) cells from the blood using leukapheresis and expand Treg cells in the laboratory in twelve people with ALS. Leukapheresis is a laboratory procedure in which white blood cells are separated from a sample of blood. Once separated, the remainder of the blood is returned to the circulation. The subject’s Treg cells will be grown (manufactured) in a specialized GMP laboratory facility, tested and purified. The subject’s own expanded Treg cells will then be injected into the skin with or without the addition of IL-2 (Interleukin-2).This study may lead to Treg cell therapy for symptom management or potential slowing of disease progression in ALS and related disorders. 
 
 Two Clinical Phase II Trials, $3,000,000 
 
 As discussed in the July 2014 press release, The ALS Association announced $3 million of funding of two Phase II clinical trials as part of ALS ACT. These include the following: 
 
 Robert Miller, M.D., California Pacific Medical Center, San Francisco, CA 
 
 A Phase 2 Randomized, Double-Blind, Placebo-Controlled, Multicenter Study of NP001 in Subjects with Amyotrophic Lateral Sclerosis (ALS) 
 
 In collaboration with NEALS and Neuraltus Pharmaceuticals, Inc., Robert Miller, M.D. of the California Pacific Medical Center will lead a placebo-controlled, six-month treatment study to confirm a signal observed in a previous study of NP001, an immune system regulator. Inflammation is thought to be a contributing factor to ALS disease progression and existing NP001 data suggest that it may have an effect on inflammation in the immune system. 
 
 Michael Weiss, M.D., of the University of Washington Medical Center in Seattle 
 
 Effects of mexiletine on cortical hyperexcitability in amyotrophic lateral sclerosis 
 
 In collaboration with NEALS, Michael Weiss, M.D., of the University of Washington Medical Center in Seattle, will lead an eight-week study comparing the effect of several dosages of mexiletine on markers of hyperexcitability. A prior study showed that mexiletine was safe to use in ALS. 
 
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 New York Genome Center - $2,500,000 
 
 Per the October 2, 2014 announcement, The ALS Association is funding the New York Genome Center’s Consortium for Genomics of Neurodegenerative Disease (NYGC CGND). The New York Genome Center is a state-of-the-art consortium, possesses the capability of generating and analyzing thousands of ALS patient DNA sequences. NYGC brings a wealth of knowledge combining the latest technology with esteemed Institutional Founding Members, Associate Members, a Founding Technology Member and internal faculty with joint appointments at the member institutions. The mission of the NYGC-CGND is to harness state-of-the-art genetic, genomic and bioinformatics tools to gain insights into motor neuron disease mechanisms and to use this knowledge to identify new diagnostic and therapeutic approaches to these devastating diseases. 
 
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 Neurocollaborative - $5,000,000 
 
 As discussed in the October 2, 2014 announcement, The Neuro Collaborative will combine the efforts of three leading California laboratories focused on ALS: The Svendsen lab at Cedars-Sinai in Los Angeles, the Cleveland lab at the University of California San Diego, and the Finkbeiner lab at the Gladstone Institutes, which is affiliated with UCSF. 
 
 The project is made possible by the unprecedented outpouring of support from the Ice Bucket Challenge. The Neuro Collaborative is one of four major new initiatives by The Association as a direct result of that support. The goal of the Neuro Collaborative is to discover and develop potential new therapies for ALS, which can be delivered to pharmaceutical companies for further development in clinical trials. Early development of potential therapeutics is a major bottleneck in ALS therapy development and represents a significant opportunity for accelerating new treatments. 
 
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 Project Mine - $1,000,000 
 
 As discussed in the October 2, 2014 announcement, The ALS Association has committed $1 million to Project MinE, an international effort to sequence the genomes of at least 15,000 people with ALS. The funding will be used to bring this effort to the United States, under the direction of researchers at University of Massachusetts Medical School in Worcester, Mass., and Emory University in Atlanta, Ga. 
 
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 Clinical management Grant - $50,000 
 
 Melinda Kavanaugh, Ph.D., Assistant Professor of Social Welfare at the University of Wisconsin in Milwaukee, $50,000 
 
 On May 12, 2015 The ALS Association announced funding of a study of young people who care for someone with ALS to better understand the needs of youth caregivers and to design support services to address those needs. While the proportion of families with a teen or child caring for a person with ALS is unknown, it is clear that many ALS families include youth who may assume caregiver roles. The new study will collect data on ALS families nationwide and conduct interviews with youth caregivers to better understand their experiences. 
 
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 Clinical Research Training Fellow - $86,667 
 
 The ALS Association and the American Academy of Neurology (AAN) announced that Hristelina Ilieva, M.D., Ph.D., of the Department of Neurology at the Johns Hopkins School of Medicine, Baltimore, Md., is this year’s recipient for the Clinical Research Training Fellowship. The purpose of the award is to recruit talented and promising young clinicians who propose innovative clinical research and to foster their development to make significant contributions to ALS clinical research. 
 
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 Biomarker Discovery and Validation Projects - $1,199,841 
 
 On June 3, The ALS Association announced the awarding of $1.2 million of new funding to advance the discovery of biomarkers that correlate with important clinical and pathological aspects of ALS disease progression. This funding will be paired with a $539,000 match donation intended for research. The awards will fund three projects, each of which focuses on the discovery of biomarkers in ALS: 
 
 Jeremey Shefner, M.D., Ph.D., Robert Bowser, Ph.D., and Shafeeq Lahda, M.D., of Barrow Neurological Institute in Phoenix, Arizona, $539,841 
 
 Expansion of NEALS Biorepository at Barrow Neurological Institute, Phoenix Ariz. and Deep Phenotyping 
 
 This project will carry out a longitudinal collection of blood and Cerebrospinal fluid (CSF) from 150 people with ALS over the course of their disease. At the same time, detailed clinical measurements will be made of respiratory function, cognitive function, muscle strength, and other aspects of the disease. The fluids and clinical data will be stored in the NEALS biorepository and be made available for biomarker discovery research. The NEALS biorepository is a major site for storage, curation, and research on ALS biosamples. This project will be led by Jeremey Shefner, M.D., Ph.D., Robert Bowser, Ph.D., and Shafeeq Lahda, M.D., of Barrow Neurological Institute in Phoenix, Arizona. This research project is also supported by a generous matching gift from Mary Lou and Ira Fulton. 
 
 Andreas Jeromin, Ph.D., and Robert Bowser, Ph.D., of Iron Horse Diagnostics of Scottsdale, Ariz., co-funded by the National Institutes of Health, $200,000 
 
 Biomarker Validation Study 
 
 This study will attempt to provide a validation of a proteomic signature of ALS in the CSF of 300 people with the disease. The validation study will build on previous results showing that the ratio provides 92 percent sensitivity and 94 percent specificity for presence of ALS. Iron Horse will further validate these tests and perform both a prospective clinical study and assay qualification within a commercially certified (CLIA) laboratory to commercialize the diagnostic tests. Validation of the biomarker would allow further development and, ultimately, the first commercially available clinical test for presence of ALS. 
 
 National Institute of Health Rare Diseases Clinical Research Consortium, the Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium (CReATe), $460,000 
 
 Biosample Collection for CReATe 
 
 This collection will support the growth and expansion of a biorepository for a newly funded National Institute of Health Rare Diseases Clinical Research Consortium, the Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium. CReATe will bring together biochemists, geneticists, clinicians, Pharma, and partner groups involved in patient education and advocacy including The ALS Association, Muscular Dystrophy Association, ALS Recovery Fund, Association for Frontotemporal Degeneration, Spastic Paraplegia Foundation, PatientsLikeMe, and the National ALS Registry. The successful completion of the CReATe Consortium objectives will lay the necessary foundation for future trials in genetically homogeneous patient populations (including, for example, people with C9orf72 repeat expansions), thereby advancing science towards development of effective therapies for patients afflicted with these devastating degenerative disorders. As part of this initiative The ALS Association will support the enhancement of a repository of biosamples collected longitudinally with deep phenotyping of approximately 700 people with ALS. This effort, led by Michael Benatar, M.D., Ph.D., of the University of Miami, will combine detailed clinical data with biosample analysis to search for biomarkers that correlate with clinical characteristics, including patterns of disease spread and the rate of disease progression. Funding by The ALS Association will allow more extensive samples to be collected, stored, and shared with the ALS research community. 
 
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 Biomarker Research Collaboration in Conjunction with Cytokinetics, Inc. Phase 3 Trial - $1,500,000 
 
 In July 2015, The ALS Association announced $1,500,000 in funding to Cytokinetics, Inc. to support the collection of clinical data and plasma samples to advance the discovery of biomarkers in ALS in VITALITY-ALS, a Phase 3 clinical trial of tirasemtiv in patients with ALS. For the first time, this unique collaboration between Cytokinetics, The ALS Association, and the Barrow Neurological Institute will enable plasma samples collected from patients enrolled in a Phase 3 clinical trial to be added to The Northeastern ALS Consortium (NEALS) Repository, a resource for the academic research community to identify biomarkers that may help to assess disease progression and underlying disease mechanisms in ALS. 
 
 
 
 
 
 2015 Annual Research Awards - $11,621,638 
 
 In July 2015, The ALS Association announced its support of 58 new research grants totaling $11,621,638 million to find treatments and a cure for ALS. These awards include investigator-initiated grants, drug development contracts, Milton Safenowitz Postdoctoral Fellowships and support of the NEALS/TREAT ALS™ Clinical Trials Network. Descriptions and dollar amounts for each grant can be found here. 
 
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 Amylyx Pharmaceuticals: $734,350 
 
 July 20, 2016 
 
 Partnership with ALS Finding a Cure as a part of ALS ACT for total of $2.96 million 
 
 Dr. Joshua Cohen, Amylyx Pharmaceuticals, Inc.: $734,350 for AMX0035 clinical trial. More information here. 
 
 Press release 
 
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 Support of the TREAT ALS™ NEALS Clinical Trial Network: $2,621,821 total 
 
 July 2016 
 
 Dr. Merit Cudkowicz, University of Massachusetts Medical School: 1,663,811. More information here. 
 
 Dr. Jeremy Shefner, St. Joseph’s Hospital and Medical Center: $958,010. More information here. 
 
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 Expand NeuroBANK: $1,679,091 
 
 August 4, 2016 
 
 Partnership with ALS Finding a Cure as part of ALS ACT for total $3.6 million 
 
 Press Release 
 
 Dr. Alex Sherman, Massachusetts General Hospital: $1,679,091 for NeuroBANK. More information here. 
 
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 ALS Association 2016 Multi-Year Investigator Initiated Grant Awards: $2,934,017 total 
 
 August 2016 
 
 Bradley Foerster, M.D., Ph.D., University of Michigan in Ann Arbor: $294,017 to use multi-modal advanced imaging to capture the temporal phases of neuroinflammation in ALS. More information here. 
 
 Jeffrey Macklis, Ph.D., Harvard University: $300,000 to study potential abnormalities of corticospinal-specific growth cone proteomes, RNA and precise circuit wiring in ALS mice. More information here. 
 
 Jada Lewis, Ph.D., University of Florida: $300,000 to study new mouse models to dissect out the function of the ALS-associated protein Matrin. More information here. 
 
 Brian Black, Ph.D., University of California San Francisco: $300,000 to study the role of Zfp106 in RNA metabolism and ALS. More information here. 
 
 Mervyn Monteiro, Ph.D., the University of Maryland: $300,000 to perform gene profiling to determine the initiator mechanisms involved in disease in a UBQLN2 mouse model of ALS-FTD. More information here. 
 
 Jeffrey Rothstein, M.D., Ph.D., Johns Hopkins University: $300,000 to study how the C9orf72 nucleotide repeat expansion disrupts nucleocytoplasmic transport. More information here. 
 
 Thomas Maniatis, Ph.D., Columbia University: $300,000 to perform single-cell studies of ALS disease progression. More information here. 
 
 Wilfried Rossoll, Ph.D., Emory University in Atlanta: $300,000 to study molecular mechanisms of PABPN1-mediated suppression of TDP-43 toxicity. More information here. 
 
 Gene Yeo, Ph.D., University of California San Diego: $300,000 to study stress granule components in models of ALS. More information here. 
 
 Thomas Lloyd, M.D., Ph.D., Johns Hopkins University: $300,000 to study mechanisms of cytoplasmic protein aggregation and neurodegeneration in Drosophila (fly) models of C9orf72 ALS. More information here. 
 
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 ALS Association 2016 Starter Grant Awards: $425,000 
 
 August 2016 
 
 Peter Todd, M.D., Ph.D., University of Michigan: $25,000 to study the involvement of the C-terminal fragment in C9ALS/FTD RAN-translated dipeptide repeat toxicity. More information here. 
 
 Carlos A. Castañeda, Ph.D., Syracuse University: $50,000 to study the effects of ubiquilin-2 ALS mutations on structure, dynamics and interactions with other ALS-associated proteins. More information here. 
 
 Marco Peviani, Ph.D., Dana Farber Cancer Institute: $50,000 to develop microglia-targeted MRI/PET traceable nanovectors as an innovative therapeutic platform for investigating and shaping microglia reactivity to improve ALS therapy. More information here. 
 
 Sandra Almeida, Ph.D., University of Massachusetts Medical School: $50,000 to study methods for reducing repeat toxicity as a therapeutic approach in C9orf72 ALS/FTD. More information here. 
 
 Mai ElMallah, Ph.D., University of Massachusetts Medical School: $50,000 to develop gene therapy for upper airway dysfunction and respiratory insufficiency in an ALS mouse model. More information here. 
 
 Kausiki Datta, Ph.D., University of Florida: $50,000 to develop a high-throughput screening assay to identify small molecules that decrease transcription of the C9orf72 expansion. More information here. 
 
 Chunlai Wu, Ph.D., Louisiana State University Health Sciences Center: $50,000 to study enhancing the activity of a gene called Mask as a therapeutic approach for treating ALS due to mutations in the FUS gene. More information here. 
 
 Nadine Bakkar, Ph.D., St. Joseph's Hospital and Medical Center: $50,000 to study disruption of the integrity of the barrier between blood and cerebrospinal fluid in ALS. More information here. 
 
 Nicolas Fawzi, Ph.D., Brown University: $50,000 to study disruption of TDP-43 granule assembly by ALS mutations. 
 
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 ALS ONE Massachusetts ALS Partnership (MAP): $2 million ALS Association commitment 
 
 November 4, 2016 
 
 Partnership with ALS Finding a Cure and ALS ONE 
 
 Press Release 
 
 Dr. Steven Perrin, ALS Therapy Development Institute: $650,000 to therapies targeting the inflammatory pathway. More information here. 
 
 Dr. Nazem Atassi, Massachusetts General Hospital: $675,000 to build a regional clinical trial network. 
 
 Dr. Robert Brown, University of Massachusetts Medical School: $675,000 to develop strategies to silence the production of toxic RNA and proteins from the mutant gene C9orf72. 
 
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 The ALS Association Funds Additional Grants in fall 2016: $735,000 
 
 November 2016 
 
 Dr. Jiou Wang, Johns Hopkins University: $400,000 to project “Targeting proteotoxicity as the common denominator in ALS.” 
 
 Dr. Andrea Malaspina, Queen Mary University of London: $60,000 to project “Going Dry: empowering neurofilament-based biomarkers studies for disease monitoring in amyotrophic lateral sclerosis.” 
 
 Dr. Albert Ascherio, Harvard University: $275,000 to project “Nutrition and Disease Prevention: Examining polyunsaturated fats and risk of ALS.” 
 
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 RNS60 Trial with Biomarkers: $500,000 ALS Association commitment 
 
 December 2, 2016 
 
 Partnership with ALS Finding a Cure and NEALS for $1,000,000 total 
 
 Press Release 
 
 Dr. Ettore Beghi, IRCCS Mario Negri Institute for Pharmacological Research in Italy: $500,000 to project “The effects of RNS60 on ALS biomarkers.” 
 
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 Assistive Technology Challenge: $400,000 
 
 December 7, 2016 
 
 Partnership with Prize4Life 
 
 Press Release 
 
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 Additional Funding to Project MinE U.S.: $671,385 total 
 
 January 2017 
 
 Dr. John Landers, University of Massachusetts Medical School: $568,896 
 
 Dr. Jonathan Glass, Emory University: $102,489 
 
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 New Lawrence and Isabel Barnett Drug Development Program Awards: $998,500 total 
 
 February 9, 2017 Press Release 
 
 Dr. Thomas Lloyd, Johns Hopkins University: Preclinical development of KPT-350 for C9-ALS: $500,000 over 2 years. More information here. 
 
 Dr. Richard Keenan, Optikira LLC: Validating inhibition of IRE1alpha kinase/RNase as a therapeutic approach to ALS: $498,000 over 2 years. More information here. 
 
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 New Milton Safenowitz Postdoctoral Fellows – Class of 2016: $600,000 total 
 
 March 2, 2017 
 
 Press Release 
 
 Vicente Valenzuela, Ph.D., University of Chile: $100,000. More information on his project here. 
 
 Bruno Miguel da Cruz Godinho, Ph.D., University of Massachusetts Medical School: $100,000. More information on his project here. 
 
 Sergey Stavisky, Ph.D., Stanford University in Stanford: $100,000. More information on his project here. 
 
 Tiffany Todd, Ph.D., Mayo Clinic in Jacksonville: $100,000. More information on her project here. 
 
 Jeanne McKeon, Ph.D., University of Massachusetts Medical School: $100,000. More information on her project here. 
 
 Amanda Gleixner, Ph.D., University of Pittsburgh: $100,000. More information on her project here. 
 
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 Biomarker Grand Challenge Award Winner: $499,966 ALS Association commitment 
 
 March 13, 2017 
 
 In partnership with ALS Finding a Cure 
 
 Dr. Timothy Miller and team, Washington University in St. Louis: Developing a TDP-43 PET Tracer: $1,000,000 total prize 
 
 Press Release 
 
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 2017 Sheila Essey Award winner: $50,000 
 
 March 15, 2017 
 
 In partnership with the Essey family 
 
 Dr. John Ravits, University of California San Diego 
 
 Press Release 
 
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 2017 Clinical Research Fellowships: $370,000 
 
 March 16, 2017 
 
 In partnership with the American Academy of Neurology (AAN) 
 
 Press Release 
 
 Dr. Sabrina Paganoni, University of Massachusetts Medical School: Clinician Scientist Development Award: $130,000: A phase 2 study of urate elevation in ALS 
 
 Dr. Nicholas Olney, University of California San Francisco: Clinical Research Training Fellowship: $240,000: Cervical spine imaging and CSF neurofilament light chain as biomarkers in patients with ALS 
 
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 ALS Online Genetics Database (ALSoD) Update: $150,000 ALS Association commitment 
 
 April 21, 2017 
 
 In partnership with the Motor Neurone Disease Association and PatientsLikeMe 
 
 Press Release 
 
 Dr. Ammar Al-Chalabi, King’s College, London: $250,000 total grant 
 
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 Additional Funding to the Neuro Collaborative: $2,000,000 total 
 
 April 2017 
 
 Dr. Don Cleveland, University of California San Diego: $1,000,000 
 
 Dr. Clive Svendsen, Cedars-Sinai: $1,000,000 to ALS on a Chip project 
 
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 ALS Association 2017 Multi-Year Investigator-Initiated Grant Awards: $3,850,000 
 
 December 2017 
 
 Dr. Carlos Castañeda, Syracuse University, $300,000, Molecular basis and effects of Ubiquilin-2 phase separation on association with ALS-linked proteins 
 
 Dr. Magdalini Polymenidou, University of Zurich, $300,000, Understanding the role of dynamic polymerization of TDP-43 in health and disease 
 
 Dr. Philip Wong, Johns Hopkins University, $300,000, TDP-43 splicing repression as a therapeutic target for ALS 
 
 Dr. Shuying Sun, Johns Hopkins University, $300,000, RAN translation of hexanucleotide repeats in C9ORF72-ALS/FTD 
 
 Dr. Marka Van Blitterswijk, Mayo Clinic Jacksonville, $250,000, Identification of novel biomarkers for C9ORF72-linked diseases, combining a targeted approach with an unbiased screen 
 
 Dr. Claudia Fallini, University of Massachusetts Medical School, $300,000, Dissecting the link between cytoskeletal disruption and mRNA processing in ALS 
 
 Dr. J. Paul Taylor, St. Jude Children’s Research Hospital, $300,000, How disturbance in stress granule dynamics is converted into TDP-43 pathology 
 
 Dr. Mart Saarma, University of Helsinki, $300,000, CDNF and CDNF variants - a novel therapy for ALS 
 
 Dr. Antonella Favit-VanPelt, Thera Neuropharma, $300,000, Selection of a novel target clinical candidate for the treatment of ALS 
 
 Dr. Randall Tibbetts, University of Wisconsin, $300,000, Drosophila models of ubiquilin-associated ALS 
 
 Dr. Jeffrey Agar, Northeastern University, $300,000, Tethering cysteine pairs with cyclic disulfides: a method for stabilizing fALS SOD1 variants 
 
 Dr. Chunlai Wu, Louisiana State University Health Sciences Center - New Orleans, $300,000, Enhancing Mask/ANKHD1 activity as a therapeutic approach for treating ALS 
 
 Dr. Elijah Stommel, Dartmouth College, $300,000, Investigating aerosolized cyanobacteria in Amyotrophic Lateral Sclerosis 
 
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 ALS Association 2017 Starter Grant Awards: $500,000 
 
 December 2017 
 
 Dr. Krista Spiller, University of Pennsylvania, $50,000, Uncovering ALS-related changes in motor circuits and their functional consequences on subsequent disease progression in rNLS8 mice 
 
 Dr. Gabriella Viero, Institute of Biophysics CNR, $50,000, Tag-free axonal translatome of mouse models of ALS/FTD to reveal defects in axonal mRNA transport and association to axonal polysomes 
 
 Dr. Qiang Zhu, Ludwig Institute for Cancer Research, $50,000, Determining whether gain of toxicity from ALS/FTD-linked hexanucleotide repeat expansion synergizes with reduced C9ORF72 function to drive age-dependent ALS/FTD 
 
 Dr. Jacob Ayers, University of Florida, $50,000, Developing a mouse model to study the cell-type specific effects on ALS disease spread 
 
 Dr. Sandrine Da Cruz, Ludwig Institute for Cancer Research, $50,000, Identifying molecular targets to enhance muscle innervation in Amyotrophic Lateral Sclerosis 
 
 Dr. Megan McCain, University of Southern California, $50,000, Engineering robust and functional human neuromuscular junctions in a dish for ALS disease modeling and drug screening 
 
 Dr. Mariana Pehar, Medical University of South Carolina, $50,000, RAGE inhibition as a therapeutic approach in ALS models 
 
 Dr. Philip Smaldino, Ball State University, $50,000, Enzymatic regulation of toxic G-quadruplex structures in ALS cells by G4 resolvase 1 
 
 Dr. Meredith Jackrel, Washington University, $50,000, Countering TDP-43, FUS, and dipeptide repeat protein toxicity with engineered Hsp104 variants 
 
 Dr. Timothy Lu, Massachusetts Institute of Technology, $50,000, Ameliorating TDP-43-associated pathogenesis with global transcriptional perturbations 
 
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 New Milton Safenowitz Postdoctoral Fellows – Class of 2017: $500,000 
 
 December 2017 
 
 Dr. Anthony Giampetruzzi, University of Massachusetts Medical School, $100,000, Identifying therapeutics for ALS using ALS-linked mutant Profilin-1 
 
 Dr. Maria Purice, St. Jude Children’s Research Hospital, $100,000, Linking TDP-43 pathology with stress granule dynamics 
 
 Dr. Yue Li, Scripps Florida, $100,000, Development of RNA-templated small molecules to treat C9ALS/FTD 
 
 Dr. Nibha Mishra, Massachusetts General Hospital, $100,000, Identifying determinants of FUS nucleocytoplasmic localization by CRISPR/Cas9 genetic screen in ALS patient cells 
 
 Dr. Meredith Corley, University of California San Diego, $100,000, Accurate RNA structural studies of transcripts targeted by RNA binding protein hnRNP A2/B1 
 
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 2017 Clinical Management Grants: $534,392 
 
 December 2017 
 
 Dr. Stephen Goutman, University of Michigan, $200,000, Utility of 3D printed masks for improving compliance and efficacy of non-invasive ventilation in subjects with amyotrophic lateral sclerosis: A pilot feasibility study 
 
 Dr. Orla Hardiman, Trinity College Dublin, $200,000, A randomised controlled study of psychological intervention in ALS to address the significant and complex mental health issues facing caregivers 
 
 Dr. David Walk, University of Minnesota, $134,392, A pilot study of lung volume recruitment combined with expiratory muscle strength training to facilitate ventilatory and bulbar function in ALS 
 
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 2017 Lawrence and Isabel Barnett Drug Development Program Awards: $1,100,000 
 
 December 2017 
 
 Dr. Raymond Roos, The University of Chicago, $200,000, Combating ER stress in G85R ALS mice 
 
 Dr. Nicolas Maragakis, Johns Hopkins University, $200,000, A GLP-1 analog for the treatment of ALS 
 
 Dr. Antonius Bunt, Izumi Biosciences LLC, $100,000, Complement DoD grant W81XWH-16-1-0072 for PK enhancement of cART in HERV-K + ALS-FTD patients to reverse neuroinflammation, multi drug resistance and improve outcomes 
 
 Dr. John Landers, University of Massachusetts Medical School, $200,000, Investigating pridopidine, a Sigma-1 receptor activator, as a novel therapeutic treatment for ALS 
 
 Dr. Timothy Miller, Washington University, $77,750, Pathological analysis of selective autophagy in sporadic and familial ALS 
 
 Dr. Wen Hwa Lee, University of Oxford, $200,000, Generation and validation of open access recombinant monoclonal antibodies for reproducible ALS research 
 
 Dr. Eliahu Heldman, Lauren Science LLC, $75,000, Treatment of ALS by non-invasive, targeted delivery of GDNF to motor neurons using novel V-SmartTM nanovesicles (LAUR-301) 
 
 Dr. John Ravits, Regents of the University of California, $47,250, Pathological analysis of selective autophagy in sporadic and familial ALS 
 
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 2017 Strategic Initiatives: $2,713,512 
 
 December 2017 
 
 Dr. Chad Heatwole, University of Rochester, $225,241, Development of a clinically relevant outcome measure for ALS therapeutic trials 
 
 Dr. Gilles Guillemin, Macquarie University, 60,000, New directions for early diagnosis of MND: a large-scale longitudinal analysis of multiple biomarkers to find diagnostic and progostic "fingerprints" 
 
 Dr. Steven Finkbeiner, The J. David Gladstone Institutes, $1,000,000, ALSA-Neuro Collaborative identification and validation of therapeutic targets and developments of therapeutics for ALS 
 
 Dr. John Landers, University of Massachusetts Medical School, $841,271, Project MinE US-Whole genome sequencing of a large cohort of sporadic ALS patients 
 
 Dr. Don Cleveland, Ludwig Institute for Cancer Research, $60,000, Trans-cellular transmission of misfolded TDP-43 and ALS progression 
 
 Dr. Adele McCormick, University of Westminster, $327,000, Trans-cellular transmission of misfolded TDP-43 and ALS progression 
 
 Dr. Markus Otto, University of Ulm, $200,000, Neurofilament Assay 
 
 Top ||||| NEW YORK, July 15, 2015 /PRNewswire/ -- 
 
 Data Analysis Examines Effectiveness Of The ALS Ice Bucket Challenge One Year Later 
 
 The ALS Ice Bucket Challenge raised more than $220 million for the ALS Association, more than 12 times what the organization had raised the previous year, but the influx of donations and massive awareness received during last summer's Ice Bucket Challenge will be challenging to maintain, according to a data analysis released today by consumer healthcare insights organization, Treato. A survey of more than 500 Treato.com users reveled that only 14 percent of participants indicated that they are very likely to donate again this year; however, 50 percent indicated that they are somewhat likely to give again, indicating that with proper outreach, the ALS Association could maintain strong momentum. 
 
 Keeping up the awareness momentum will also prove challenging for the ALS Association as 43 percent of participants felt they were no more familiar with ALS after the Ice Bucket Challenge last summer; however when narrowed down to those who actually participated in the challenge, awareness of ALS rose three times higher concluding that direct participation leads to increased awareness. 
 
 In addition to the survey, Treato compiled and analyzed more than 254,000 online conversations about ALS discussing awareness, drugs and a cure, discovering ALS discussions grew close to six times normal activity last summer. Specifically, online conversations about ALS and a cure peaked the same time as the Ice Bucket Challenge demonstrating the effectiveness of the campaign. 
 
 When asked about how the funds raised for the ALS Association should be spent, 63 percent of survey participants felt the most important way to spend the funds is on finding a cure for the disease including drug research where as 16 percent felt the funds should be used for financial support for those living with the disease, 13 percent felt the funds should be used on educational support and 8 percent felt the funds should be used on public policy advocacy efforts. 
 
 Additional Treato findings include: 
 
 Engagement didn't guarantee donation: 23 percent of survey participants who reported participating in the ALS Ice Bucket Challenge did not donate to the Association 
 
 Participation drove awareness: 29 percent of survey participants who reported participating in the ALS Ice Bucket Challenge said they had never heard of or were not very familiar with ALS before participating 
 
 Hollywood also drove disease awareness: online mentions of ALS and Stephen Hawking were three times higher than average during last year's Oscar season in which The Theory of Everything , the Stephen Hawking biopic, won best actor 
 
 also drove disease awareness: online mentions of ALS and Stephen Hawking were three times higher than average during last year's Oscar season in which , the Stephen Hawking biopic, won best actor Generics are on the rise: discussions about Riluzole, the generic of Rilutek, which is a drug used to reduce the symptoms of ALS, has doubled in conversations over the past five years 
 
 "Breaking through online health conversations allows us to understand the performance and effectiveness of marketing," says Ido Hadari, CEO of Treato. "The ALS Ice Bucket Challenge proved to be an effective campaign not only terms of immediate money raising, which is relatively easy to measure, but also in terms of awareness creation, consumer engagement and building long-term disease and organization advocates." 
 
 Find more information on Treato's ALS Ice Bucket Challenge data analysis by viewing the Infographic. 
 
 About Treato: 
 
 Treato™, the leading source of real health insights from millions of real health consumers, uses patented analytics and big data technology to turn billions of disparate online conversations into meaningful social intelligence. With two billion posts analyzed and continuously expanding, Treato has partnered with 13 of the top 50 pharmaceutical companies and its consumer website helps millions of visitors each month. 
 
 Treato is privately held with offices in Israel, New York and Princeton, NJ. Investors include Reed Elsevier Ventures, OrbiMed Partners and New Leaf Venture Partners, among others. For more information please visit http://treato.com and corp.treato.com. 
 
 Supporting Resources: 
 
 Learn more on the Treato blog 
 
 Like Treato on Facebook 
 
 Follow Treato on LinkedIn 
 
 Follow Treato on Twitter: @Treato_com 
 
 For immediate release: 
 
 Allyson Noonan 
 
 Media Relations Manager 
 
 +1(858)245-7256 
 
 allysonn@treato.com 
 
 
 
 SOURCE Treato ||||| Members of the ALS community aim to reignite the ice-bucket challenge with an eye to making it an annual fundraising event, while acknowledging it will likely continue on a smaller scale. 
 
 Their rallying cry: Every August until a cure. 
 
 "A lot of people think it was a one-time shot," said Pat Quinn, who was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2013 and helped catalyze the ice-bucket challenge last year. "But there are a lot of ridiculous things that caught on that are now worldwide movements every year." 
 
 As an example, he and others cited Movember — an annual campaign in which men grow mustaches during the month of November to raise money and draw attention to prostate cancer. 
 
 To stay true to the organic roots of the ice-bucket challenge, it will be set in motion next month by some of its originators. The ALS Association is to play a supporting role. The nonprofit has redesigned its ice-bucket challenge web page and prepared a series of emails for its donors, among other steps designed to spur on the challenge once again. 
 
 ALS Association officials said they have a fundraising goal but declined to make it public. They do not expect to match last year’s $115 million in donations. Still, in the wake of the inaugural ice-bucket challenge, 600,000 new donors requested ongoing communication from the nonprofit, and at the national level its monthly fundraising numbers have be running about $500,000 ahead of pre-ice-bucket challenge levels. 
 
 "This will be an interesting time," said Carrie Martin Munk, chief communications and marketing officer for the ALS Association. "We know some people give donations once a year. Some of these people could be once-a-year ice-bucket donors." 
 
 Internet Rocket Fuel 
 
 The ice-bucket challenge has its own chapter in the annals of nonprofit fundraising, and it goes like this: In July 2014, people activated a grass-roots social-media campaign to generate attention and donations for ALS, also referred to as Lou Gehrig’s Disease. Mr. Quinn, 32, and 30-year-old Pete Frates, who also has ALS, were among the first to rope in family members, friends, colleagues, and neighbors. 
 
 Advertisement 
 
 In the challenge, participants were prompted to douse themselves with buckets of ice water or donate to the ALS Association, one of a number of ALS-dedicated groups. Many chose to do both. The soakings were captured on video and then uploaded to Facebook and Instagram with challenges to three new participants. 
 
 The water may have been icy, but the videos proved to be Internet rocket fuel. By August, the ice-bucket challenge was tearing through social-media feeds, stoked by celebrities, professional athletes, business leaders, and politicians. 
 
 The ALS Association, which had welcomed a new CEO just months earlier, found itself the beneficiary of a viral nonprofit fundraising campaign with no precedent. Organization officials fielded a wave of media attention. They began releasing regular fundraising tallies, which further stoked excitement and participation, said Ms. Munk of the ALS Association. 
 
 Pre-ice-bucket challenge, the nonprofit had a $20 million operating budget. At the peak of the campaign, in August, it received $11.5 million in donations in 24 hours. By the time the water stopped flying, the public had donated $220 million worldwide to the cause, a little more than half to the ALS Association. 
 
 The ALS Association gained 2.5 million in new donors, and 600,000 requested to be added to the nonprofit’s standing donor list. 
 
 One-Time Magic? 
 
 The ice-bucket challenge, as it occurred in 2014, probably was a one-time phenomenon, many experts say. June Bradham, chairman of the fundraising consulting firm CorporateDevelopMint, said that part of the magic was that it was set in motion not by an organization but by caring individuals. The ALS Association does have a "great opportunity to build deeper relationships with those who participated and their contacts," she said. 
 
 Fundraising consultant Edith Falk said that the publicity generated by the ice-bucket challenge reminded her of a 1999 publicity stunt by the City of Chicago called Cows on Parade, in which 300 ornately decorated, life-size cows were installed around the city and then later auctioned off. It was a huge hit, and there were attempts to repeat it in Chicago and other cities in subsequent years. But it never generated anywhere near the interest and excitement of the first event, she said. 
 
 "Certainly the ALS Association might consider some variation of this — a different, fun, creative event that lends itself well to going viral, but even that is unlikely to generate the amazing level of attention and support that the ice-bucket challenge did," Ms. Falk said. 
 
 Advertisement 
 
 While it is unlikely that the campaign will capture the same attention that it did in 2014, it could still represent a significant fundraising and public-education event, said fundraising consultant Roger Craver. The building process starts with setting reasonable expectations. 
 
 "If the founding folks don’t get too hyperbolic and promise a mirror-image repeat of last year, they may well make this the year when the ice-bucket challenge starts down the path of coming a tradition," he said. 
 
 Spending Detailed 
 
 On Wednesday, the ALS Association and the ALS Finding a Cure Foundation said they would spend $3 million on ALS-related clinical studies. It follows the $21.7 million in ice-bucket-related-spending announced by the ALS Association in October. The bulk of that sum, $18.5 million, is supporting four research projects. 
 
 The organization also increased spending on direct services, provided via a network of 43 treatment centers, to $25,000 per center for the next three years. Previously, the funding was $12,500 per center. 
 
 The balance of the initial outlay is earmarked for policy work in Washington. 
 
 It can cost as much as $2 billion to move a drug through research and development and into the market, said Lance Slaughter, chief chapter-relations and development officer at the ALS Association. 
 
 "What that means is we would need 10 to 20 ice-bucket challenges to actually deliver on the promise of what was launched last summer," Mr. Slaughter said. 
 
 And as impressive as the estimated 5 million participants were, there are many more to be stirred to action, he said. 
 
 "There are 295 million people in this country who didn’t take the ice-bucket challenge," Mr. Slaughter said. "We are going after those people. " 
 
 While the 2014 campaign was extraordinary, little has changed, say ALS Association officials. There is no treatment for ALS, much less a cure. 
 
 "It is such a difficult disease to break down and study," said Mr. Quinn. "Really, what happened last year was just a start." ||||| The ALS Association Rhode Island Chapter has utilized the funds generated by the Ice Bucket Challenge to expand and enhance its level of support for several important Care Service initiatives. For instance, the chapter has added additional staffing to increase the rate and frequency of clinics being offered at the chapter-sponsored “Louise Wilcox Multidisciplinary ALS Clinic.” This has increased the number of clinics from approximately one meeting every three to four weeks, to one every two or three weeks. This new schedule has helped eliminate the growing back log of repeat patients waiting for their next appointment, as well as the waiting list of new patients who want to participate in the clinic. 
 
 The chapter also allocated $500 in Respite Care Funds per family to provide additional in-home services to ALS families that have exhausted their annual Respite Fund allocation. The chapter increased its total annual Respite Fund allocation by 25 percent per ALS family, from $2000 to $2,500. 
 
 Additionally, the chapter expanded its Home Access Program that offers grants to help individuals pay for items like handicapped ramps and stair lifts. These reimbursement grants were increased by 50 percent, from $1,000 to $1,500 per household. 
 
 Finally, to help meet the requests of ALS patients and caregivers, the chapter purchased new items for its Equipment Loan Program. These new medical equipment purchases included a Hoyer Lift, several Recliner/Lift Chairs and five new Transport Wheelchairs. ||||| Treato helps patients and caregivers make more informed healthcare decisions by analyzing online conversations about medications and health conditions and sharing what others like you are experiencing and sharing online. While the information we gather isn't from trained medical professionals, we aim to empower patients to better understand what’s ailing them, get insights to make decisions and connect with others like them. 
 
 "My eczema was itching for hours, after reading this site, I put on Capazsin cream and finally it stopped itching. Burned a little which felt great at least it wasn't itching." 
 
 "I got a bit better but then called another dermatologist who thought I might have a staph infection . She told me to take a bleach bath and I was cured almost immediately." 
 
 "Let me offer my experience. Prior to starting radiation, my nurse suggested I get a PEG. My RO, said no, wait and see - the PEG could be added later. The key would be weight loss." 
 
 "It was hard to eat and keep it down after a few radiation treatments. I think the main thing that helped was gargling with salt and baking soda every hour. I drank a lot of warm liquids, herbal teas." 
 
 Treato does not review third-party posts for accuracy of any kind, including for medical diagnosis or treatments, or events in general. Treato does not provide medical advice, diagnosis or treatment. Usage of the website does not substitute professional medical advice. 
 
 The side effects featured here are based on those most frequently appearing in user posts on the Internet. The manufacturer's product labeling should always be consulted for a list of side effects most frequently appearing in patients during clinical studies. Talk to your doctor about which medications may be most appropriate for you. 
 
 The information reflected here is dependent upon the correct functioning of our algorithm. From time-to-time, our system might experience bugs or glitches that affect the accuracy or correct application of mathematical algorithms. We will do our best to update the site if we are made aware of any malfunctioning or misapplication of these algorithms. We cannot guarantee results and occasional interruptions in updating may occur. Please continue to check the site for updated information. ||||| Bill Gates taking the ALS Ice Bucket Challenge. 
 
 The ALS Association, the organization behind last-year’s ubiquitous Ice Bucket Challenge, is plotting a re-launch of the marketing stunt in August. 
 
 The non-profit it trying to revive the viral video craze that had millions of people including celebrities, politicians and tech moguls dumping buckets of ice water on their heads in an effort to raise money for amyotrophic lateral sclerosis (Lou Gehrig’s disease) last summer. 
 
 To help jump-start the effort, the ALS Association will be launching a small advertising campaign, which will include ads on social media sites, at the end of July. The organization says the ad space is being donated. The campaign also will unveil a new microsite, created pro bono by Omnicom Group’s TBWA, that will host some of the more popular videos and also allow people to more easily donate online. 
 
 Repeating last year’s success won’t be easy. The Ice Bucket Challenge wasn’t a carefully orchestrated marketing stunt but instead a grass roots effort that started when a golfer in Sarasota, Fla. created a video that showed him dumping a bucket of ice water on his head. Thanks to social media sites such as Facebook, the effort took off and helped ALS Association raise $115 million from July 29 to Sept. 15, a far cry from the $5 million it raised in the year-earlier period. 
 
 All told, 17 million videos were created, 159 countries participated, and 70 billion video views were counted, ALS said. 
 
 ALS knows recreating the viral nature of last year’s effort may be an uphill climb and the organization says it will tread lightly when it comes to marketing. 
 
 “We never want this to be something that is too corporate or too slick,” said Brian Frederick, chief of staff at the ALS Association. 
 
 The group wants to maintain the “integrity” of the original challenge but also “remind people that it’s happening again,” Mr. Frederick added. “There is a fine line between orchestrating it and having it be organic.” 
 
 Mr. Frederick and Pat Quinn, a New Yorker who has ALS and is one of the people that helped start the challenge, spent last week making the rounds at the Cannes Lions advertising festival visiting with media, technology and ad companies in an effort to drum up help for the relaunch of the challenge. 
 
 –ALS team receiving their Cannes Lion award. 
 
 In between meetings, the Ice Bucket Challenge raked up over 11 Cannes Lion awards including landing the Grand Prix for Good award, which recognizes exceptional campaigns for charities or public service messages. 
 
 “It’s been awesome,” said Mr. Quinn, during an interview last week. 
 
 CORRECTION: Social media services are donating ad space for the ALS campaign. An earlier version of this post said the organization was paying for ads.
– On July 15, 2014, Chris Kennedy posted a video to YouTube—one that's widely regarded to be the first ALS Ice Bucket Challenge video. From there, more than 17 million people followed suit, and 2.5 million people handed the ALS Association $115 million between July 29 and Sept. 15, per the Wall Street Journal, an amount the association says could be the biggest single giving event unrelated to a disaster or emergency. So how much has been used and what will happen to the rest? Some $47.1 million has thus far been spent or budgeted, but all of the money has been generally earmarked. All spending and grants to date can be viewed here, but it's a pretty scientific read. (For instance, $2.5 million is going to a University of Massachusetts researcher for the "Development of AAV-Mediated SOD1 Gene Silencing Therapy in ALS.") More: To frame things in layman's terms: The largest chunk—67%, or $77 million—will go to research geared toward identifying treatments or a cure. The muscle-wasting disease tends to kill patients within 5 years of diagnosis, and there's currently only one life-extending drug on the market, CNN reports. The second biggest amount, $23 million, will go to "patient and community services" to help those living with the disease. One example: the restocking and expansion of equipment loan closets with items like Hoyer lifts and transport wheelchairs. The remaining $15 million will go to education ($10 million), fundraising ($3 million), and processing fees "for credit card transactions and web overage charges due to increased volume of daily web visitors during the 2014 ALS Ice Bucket Challenge." The "2014" in the previous sentence is somewhat noteworthy: The association would like there to be a 2015, 2016, and so on. The Chronicle of Philanthropy reported earlier this month that the association intends to relaunch the challenge in August. As the publication puts it, "Their rallying cry: Every August until a cure." It references the mustache-growing/prostate cancer effort Movember, which happens each November, as a sort of model. How successful might it be? A survey of 500 people by Treato found that while only 14% of those who participated are "very likely" to give, a full 50% are "somewhat likely." More on the Ice Bucket Challenge, which didn't end so well for everyone, here.