We do and don’t have spokes folks….
The Neuropathy Action Foundation is cited as a resource in IGLiving magazine…I’ve looked it over and their site does map out the ways one can speak up for neuropathies, CIDP and MMN. The founder actually has MMN…
Read the site thoroughly and start writing letters?
NORD [National Organizations of Rare Diseases] is a good resource, I am sure this board’s parent is a member. Keep in mind tho, that NORD’s constituency covers a LOT of rare diseases. My feeling is that we are in very good company tho!
I believe that WE are the best spokespersons at least on the local level. That is something we could all do without a lot of travel and stress… Like how some women’s clubs or groups like the Lions Clubs are looking for speakers…get that practice and experience and who knows?