WHO WE ARE NOT

We are not a registered charity or 501(c)3. We are not a formal organization with paid staff. We are not an advocacy group here to tell you what to think or what to lobby for. We are not an echo chamber. We make no claims to speak on behalf of all people living with ALS/MND. Though we are patient-led, we do not claim exclusive “standing” to speak on ALS/MND matters. We do not solicit donations, and do not hold fund-raising events. We have no relations with pharmaceutical companies and maintain autonomy from them.

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We recognize that initiatives like this can quickly move in different directions – it could peter out and join the long list of dormant or defunct ALS/MND groups, or it could take off and need to scale up. If the latter occurs, our status as an informal, entirely volunteer entity might need to be rethought, and we might need to pursue 501(c)3 status. We’ll cross that bridge when we get to it.