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The institute has raised and spent more than $100 million on research into effective treatments for ALS and practices open-source science. [19] After the discovery that the multiple sclerosis drug Gilenya might also be a treatment for ALS, the Institute enrolled 30 people in a Phase 2A clinical trial the drug in 2013, though it did not progress further.
PatientsLikeMe launched its first online community for ALS patients in 2006. [7] From there, the company began adding other communities for other life-changing conditions, including multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, mood disorders, epilepsy, [8] organ transplantation, progressive supranuclear palsy, multiple system atrophy, and Devic's ...
ALS Therapy Development Institute is a non-profit biotechnology center, solely focused on ALS research. ALS TDI operates the world's largest research and development program and research center. PatientsLikeMe is an online community for people affected by life-changing illnesses, including ALS; Jamie Heywood at TED
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I was diagnosed with familial ALS, or genetic ALS, in 2022. Also known as Lou Gehrig's disease, amyotrophic lateral sclerosis runs in my family.
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Though this number has gone up hugely compared with 10 years ago, only 27 per cent of men had been to therapy in 2022 (compared with 39 per cent of women). Just as it’s famously difficult to get ...
Sean Forrester Scott (May 20, 1969 – February 9, 2009) was a self-educated disease activist and researcher, filmmaker, innovator, entrepreneur and until the time of his death, the president of the ALS Therapy Development Institute, the world's largest amyotrophic lateral sclerosis research center. [1]