There is a rationale by which the calcium binding protein apoaequorin could work to slow ALS progression. Unfortunately, at this time there is insufficient information available to determine whether it does. The one small case series referred to above utilized a cocktail of therapies and is further weakened by the loss of its standardized outcome measurements. Information from the manufacturer suggests that apoaequorin is reasonably safe and well tolerated but there is no independent, systematic confirmation of this; two PatientsLikeMe members reported serious adverse events while taking it and it is fairly expensive.
At this time ALSUntangled does not recommend that patients with ALS take apoaequorin. Reasonable next steps would include a controlled study of apoaequorin in an ALS animal model and/or a small series of well-characterized patients with ALS using validated outcome measures and including serum and CSF pharmacokinetics.