Hi @dbwhitted Have you seen the questions I posed for @hopefuly33250? She tells me now that you are the one who can better answer my questions. Hope to hear from you. @gallfaith

@gailfaith I'm not very active on here so forgive my delayed response 😀
You inquired about:
1) "what does GNEM stand for?"...GNE Myopathy but I'm unsure what "GNE" means, see link below for more.
2) What is "MDA Clinic?"...It's a annual clinic provided by MDA that's intended to address the progression of MD patients, as well as, provide important information about your dx & support.
3) "Also can you supply us with a link to these clinical trials so we can connect with them"
http://www.ultragenyx.com/patients/gnem/

to @dbwhitted Thanks HEAPS. Unfortunately this is my second try to respond do you as I had written a LONG response, but shortly before I was ready to send it, it disappeared. And I am not about to start all over again. Sorry. Since I still have no idea what the GNE means I have no idea if what you are experiencing is related in any way to my problems: Myotonic Dystrophy which was determined with a biopsy. . I have never had foot drop, but I do have muscle degeneration, so I will try to find out if any thing they find out in the trials, can be of any help to me.

I had written how my problems started and how I know it was a doctor's mistake that precipitated, the start of my dystrophy back in 2006. It is an interesting story but I"m not about to start writing that that all over again .I guess the good Lord decided that was superfluous info!!!!! . Again, thanks for getting back to me. @gailfaith

@gailfaith I would've loved to read it, maybe you could rewrite later?

I believe my wife's doctor was diagnosed last year with MMD. More later but I'm getting of PC, I'm tired...

Check these sites out:
https://www.mda.org/disease/myotonic-muscular-dystrophy
https://www.mda.org/quest/article/mmd-research-seeking-to-free-proteins-from-a-toxic-web
https://www.mda.org/quest/article/in-focus-myotonic-muscular-dystrophy