Our Projects

Outside of CureC9, Push Ups for ALS, and Search for a Self Cure, Yentli collaborates on another 8 research projects across multiple countries. Each one exists because something specific is missing in the fight against C9orf72 ALS and FTD — a tool that does not exist yet, a question no one is funding, a resource the field needs but has not built. Every project has a team, a plan, and something it needs to move forward. If you can help with any of them, we would love to hear from you.

Browse projects

  • Global C9orf72 Data Registry

    C9orf72 research data is scattered across hospitals, universities, and countries. The most valuable samples in the field come from carriers who were tracked before…

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  • C9orf72 Stem Cell Bank

    Drug companies and researchers need cells from C9orf72 carriers to test potential treatments. Until now, getting those cells has been difficult, expensive, and inconsistent.

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  • Longitude Prize on ALS

    Info coming soon

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  • Accelerating Drug Candidates into ALS

    There are drugs that have been tested in humans for other conditions and shown to be safe that could work for ALS, but that…

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  • Novel Biomarker Platform

    The goal of this project is to develop a new kind of blood test for ALS. Most diagnostic tests look for one molecule at…

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  • ALS Progression Biomarkers

    Right now, doctors cannot reliably predict how fast ALS will progress in a given patient. This project is building algorithms that predict disease trajectory…

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  • Immune Response and Therapeutic Windows

    The brain has its own immune system. In C9orf72 disease, immune cells called microglia appear to start out protecting neurons and then, at some…

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  • Protein Aggregation Mapping

    Some C9orf72 carriers get ALS, others get FTD. No one knows why. This project uses one of the most powerful imaging facilities in the…

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Several of these projects require funding, and the project needs for funds fluctuate. To donate to these efforts, please give to an unrestricted fund that is split evenly between End the Legacy and research projects driven towards curing genetic ALS/FTD.