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Jaimie Heywood started his own drug research pipeline to try to cure his brother's ALS. That failed, but the effort has inspired a number of other unconventional research efforts. http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...

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The research lab that Jamie founded is ALS TDI [1], which has a database of ALS clinical trials [2]. Jamie later co-founded PatientsLikeMe, a web site for sharing medical data which has over 6,000 users who are patients with ALS [3], the first of whom was his brother Stephen [4].

(Full disclosure: I work for PatientsLikeMe.)

[1] http://www.als.net/ [2] http://www.als.net/ALS-Research/ALS-Clinical-Trials/ [3] https://www.patientslikeme.com/conditions/9-als-amyotrophic-... [4] https://www.patientslikeme.com/patients/view/40

Maybe he could get into a clinical trial with NeuralStem Inc's therapy. They seem to be having some good results with treating people with ALS with spinal stem cell injections: http://www.neuralstem.com/cell-therapy-for-als

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