My typing is a bit challenged at the moment and August and September have flown by in their usual blur of end of summer activity. I will post a catch-up, but I replied to a request for information email and thought it best to share it
The 2 best ALS treatment resources I have found are the forum @ als.net and PatientsLikeMe.com. I recommend reviewing both sites at least once a month.
There are 4 drug trials that are all generating hope. Neutralitus NP0001, and WP10 are both sodium chlorite trials that are showing high efficacy in slowing progression. There is even a renegade group of PALS that are using a DIY approach using over-the-counter ingredients.
There is also the Dexpramipexole Phase Iii trial which is in open enrollment w promising outcomes from PI/PII trials. Probably the closest to FDA approval, and HCMC is a trial site.
Neuralstem has released amazing results w their latest stem cell injections at Emory in Atlanta. The most expensive/exclusive trial of the four as it is only in Phase I -- but 8 of 12 have halted progression and 2 have strong evidence of regeneration of lost functionality.
TCM is still valuable in my opinion. It is helpful in keeping the body in balance as much as possible as it changes through disease progression. China is the best place for inexpensive and concentrated TCM -- but no cure. I am still using the herb formula I received from my visit, but I am using a local accupuncture Dr and getting herbs from Northwestern U in Bloomington. I hope this info helps!
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3 comments:
Thanks for the update, David. Are you involved in any of these trials? Do you want to be?
Hi Susan,
I'm currently working on enrollment in the NP001 trial at the Jacksonville Mayo clinic.
Wishing you good luck in getting in. Call me sometime. I'd call you but I'm sure I don't have the right phone #
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