[Stellatum]

Of possible interest:

Muscular Dystrophy Association

Abby

[AnnieB3]

Thanks, Abby. I wish the MDA would get with the technology age, and livestream their programs. Or, at the very least, have a video afterward that everyone could watch.

I also wish that they would include patients in any discussion. This "experts know everything" paradigm of the past doesn't work any longer. We patients are the experts on MG and how to live with the disease. Sure, experts know the technical and medical aspects. But we get MG like they never will!

Annie

[ErinBear]

Dear AnnieB3,

Agreed on both counts, although one of the good things if you are able to go to patient seminars like this is meeting others with the same diagnosis! For anyone who lives in the area, that's a great thing. Then you can hear what their journey is like. I think often the experts have Q&A sessions at the end of the presentations, too, which are very good. At least this is true of the MG presentations I've seen online, and other health seminars I've been to in person (for trigeminal neuralgia).

Take care,
Erin