Driving Progress with Non-Profit Partnerships

Non-profit partnership highlights:

• Create and implement Challenge programs such as the ALS Assistive Technology Challenge in partnership with Prize4Life to develop flexible, accessible technology to help people with ALS communicate with ease and the TDP43 PET Tracer Grand Challenge with ALS Finding a Cure® to create a novel biomarker to detect and track TDP43 aggregation during disease progression.
• Accelerate efforts to understand basic disease mechanisms that could possibly translate into disease therapies, such as our partnership with Target ALS to fund an effort to combine whole genome sequencing with post-mortem tissue banking of people with ALS to link gene-based mechanisms to their effects on human tissue.
• Support and collaborate with large, global precision medicine initiatives like Answer ALS to expedite gene sequencing and induced pluripotent stem cell (iPSC) technology efforts to help tailor future ALS treatments and clinical trials to the individual, since no person with ALS is the same.
• Maintain biorepositories such as the NEALS Biorepository in partnership with Northeast ALS Consortium (NEALS) to collect samples and NeuroBANK™ to store genomic and clinical data that are linked simultaneously through ongoing research studies and to share with the global research community. These biorepositories have become central repositories for ALS tissue samples, which are used by researchers throughout the world to better understand the disease and the response to therapy.
• Champion educational opportunities for people living with ALS and their caregivers, such as ALS Untangled to become better informed about alternative and off-label ALS treatments. Also, to support the creation of a Clinical Research Learning Institute (CRLI) through NEALS for people living with ALS to better inform the community on topics such as clinical trial design, statistical analysis of trials and the use of placebo groups, among others.
• Sponsor the TREAT ALS™ NEALS Clinical Trial Network to allow the network to bring new ALS studies to fruition, to provide ongoing support and management of underfunded trials and studies, and to increase the ability of NEALS affiliated clinical centers to perform efficient, high-quality ALS trials.
• Participate in large collaborative efforts such as Collaboration for a Cure, made up of 18 ALS partner organizations working together toward a common goal, to move rapidly toward effective treatments and a cure.
• Lead a groundbreaking initiative to create the first ever ALS FDA guidance document for companies to navigate the regulatory pathway, which will help bring drugs to people living with ALS faster. This exciting effort includes 30 people living with ALS, 45 of the world’s leading ALS researchers and clinicians, as well as representatives from the National Institutes of Health, pharmaceutical and biotech industries and other ALS non-profit organizations.