Join the fight and help us discover the genetic basis of ALS. Start or support a local initiative to raise funds. Project MinE, make it yours!
Through its Translational Research Advancing Therapies for ALS (TREAT ALS™) program, The ALS Association’s global research program has funded more than $99 million in research and clinical management projects. This emphasis on quality, peer-reviewed science has resulted in some of the greatest ALS research discoveries to date. Through this program, The Association has partnered with government agencies, pharmaceutical and biotech companies, and other ALS organizations.
The ALS Association has committed $1 million to Project MinE for an international effort to sequence the genomes of at least 15,000 people with ALS and 7,500 control persons. The funding will be used to bring this effort to the United States with the goal of sequencing the genomes of 1,000 people with the disease. Large-scale whole-genome sequencing of many individuals with ALS plays a key role in gaining a better understanding this disease and finding new treatments for it. The Association has partnered the University of Massachusetts Medical School in Worcester, Massachussetts, and Emory University in Atlanta, Georgia. John Landers, Ph.D., University of Massachusetts Medical School, and Jonathan Glass, M.D., Emory, will lead this project.
Sequenced genomes will become part of a worldwide ALS genome database and made available to ALS researchers for investigations into the causes of the disease. In addition, Project MinE researchers will collect tissue samples that can be used for development of stem cell lines, a key tool in ALS research.
Funding for the project is made possible by the unprecedented outpouring of support from the ALS Ice Bucket Challenge.
In the U.S., we have an ambassador for Project MinE.
Neil Thakur became Executive Vice President of Mission Strategy at the ALS Association in May 2018. He leads the advocacy, care services, and research programs for the Association.
Prior to joining the Association, Neil served in the National Institutes of Health (NIH) Office of the Director, where he supported NIH governance and helped make NIH research more open and less burdensome. He managed the world’s largest policy to make biomedical research papers publicly accessible and co-chaired the White House taskforce that lead to the requirement that all federal science agencies adopt similar policies. He also spent a year on detail to the US Senate Special Committee on Aging, raising awareness about quality issues in long-term health care, particularly around Alzheimer’s care and pharmaceuticals.
Prior to his time at NIH, Neil worked with health systems in many capacities. He was Assistant Director of Health Services Research and Development at the Department of Veterans Affairs (VA), leading an evaluation service for the VA health system and represented the VA research service in setting clinical performance measures. In his post-doctoral-fellowship, he studied the interactions between jails, Medicaid and behavioral health care, and how changes in health financing impacted people’s utilization of these systems. During graduate school, he worked throughout the Connecticut behavioral health system, helping to implement managed care and health information systems, and raise tens of millions of dollars in competitive grants.
Neil won many awards for his government service, including several NIH Director’s Awards, and the Secretary for Health and Human Services’ award for Meritorious Service, the second highest award that the Secretary can bestow. He holds a Ph.D. in Health Policy from Yale University School of Public Health and completed a NIMH postdoctoral fellowship in mental health services research at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill. He lives in Maryland with his wife Jen.
A technology consultant who specializes in security and risk at the multinational business corporation Accenture, Josh von Schaumburg has a personal connection to ALS. In June 2013, doctors diagnosed his older brother, Eric, with the sporadic bulbar form of the disease just weeks before Eric’s thirtieth birthday. In addition, one of his Dutch colleagues at Accenture, Garmt van Soest, was also diagnosed with ALS around this time.
Through his work, Von Schaumburg has collaborated with Accenture employees across the globe on several initiatives supported by Van Soest which aim to support the ALS community, particularly through Project MinE. Von Schaumburg currently serves as key liaison for Accenture between Project MinE in the U.S. and Europe.
Von Schaumburg is also working with his colleagues at Accenture on a “crowdfunding” campaign, whereby his co-workers in the U.S. will have the opportunity to help fund a venture such as Project MinE via Accenture’s new Corporate Citizenship fundraising platform. He is also enlisting his IT colleagues to volunteer their time and talents to help design the infrastructure for data storage/genome analysis, which will be housed at Project MinE’s headquarters in the Netherlands, and which Van Soest is supporting. Accenture is a company known for its ability to solve complex business problems; Von Schaumburg and Van Soest just see ALS as another global problem Accenture is helping to solve!
Project MinE research in the USA is performed by several experts.
Dr. Landers’ career has mainly focused on using new and high-throughput technologies for the identification of disease genes with a particular focus on ALS. His laboratory was part of a collaboration that identified the FUS gene as a significant contributor of familial ALS. His lab also headed the research of a genome wide association study that identified the KIFAP3 gene as a modifier of survival in ALS patients. He has subsequently been a collaborator on numerous follow-up genome wide association studies. Through his long-standing interest of novel technologies, his lab is now currently focused on using next-generation sequencing approaches to identify additional genes contributing to ALS. This includes using whole-genome sequencing, RNA-Seq and exome capture/sequencing. This effort has led to the identification of mutations in PFN1 in familial ALS. PFN1 is a regulator of actin polymerization further emphasizing the role of cytoskeletal genes in the pathogenesis of ALS. Through the Project MinE collaborative effort, they hope to further extend our understanding of the genetics of ALS.
The Emory ALS Center, led by Dr. Jonathan Glass, is one of the largest clinical centers for ALS in the United States. The Center provides true multidisciplinary care for patients and families with ALS and related disorders. The team of neurologists, neurosurgeons, nurses, therapists, and dieticians care for both the physical and emotional needs of our patients and their families. The focus of the patient model is on independence and quality of life through state-of-the-art intervention.
Emory ALS Center physician-scientists continue to perform groundbreaking research, including developing surgical methods for delivery of therapeutics to the spinal cord. The researchers search tirelessly for a cure for this devastating disease, focusing on basic mechanisms of motor neuron degeneration, genetics of ALS, and new experimental treatments.