Hi @snagydude, I definitely can relate to where you are coming from but I am not sure that Connect is best forum to plead with members to take action. The purpose of Connect is to meet other members with similar conditions and symptoms and learn from their experiences what has helped or might help provide some relief. That said, I do agree that all of us with PN that can get involved with and/or support research. While it may not help us directly, it may help others in the future. I've participated in quite a few different studies for other conditions and did register with Foundation for Peripheral Neuropathy using their patient registry listed below.

To your point of starting this discussion, there are a lot of great suggestions and tips on the Neuropathy Action Foundation:
-- Advocacy is Empowerment: http://www.neuropathyaction.org/advocacy_is_empowerment/index.htm

I would rather have patient organizations leading the charge and not my representatives in Congress. Sad to say but we as PN patients are large in number but so are other life threatening conditions (just my humble opinion). I do personally support the Foundation for Peripheral Neuropathy and contribute when I can. They have a lot of ties into research with a few listed here. Neuropathy Commons is another good organization but they only list their researchers and not current projects (that I could find):

-- Why PN patients should participate in the PNRR: https://www.foundationforpn.org/research-registry/
-- Current Research: https://www.foundationforpn.org/current-research/
-- IMAGiNe Study: https://www.foundationforpn.org/imagine-study/
-- Research Registry for Patients: https://www.foundationforpn.org/research-registry/
-- Research Registry for Researchers: https://www.foundationforpn.org/research-registry-for-researchers/
-- Clinical Research Training Scholarship: https://www.foundationforpn.org/clinical-research-training-scholarship/
-- NeuropathyCommons.Org Research Team: https://neuropathycommons.org/research/directory

Hoping each new day is better and better for you.