What it's like to live with a progressive neuromuscular disease

Wednesday, March 4, 2015

Sanford Burnham Rare Disease Day Symposium speech 2/27/15

I debated posting┬áthis most recent speech titled, “Letting Go While Holding On” from the Sanford Burnham Rare Disease Day Symposium in San Diego last Friday. Partially because I did a fair amount of cutting and pasting from past speeches and partially because I actually fumbled a few times (I know, the horror). But I know I must use any opportunity I can to put our message out there.

It’s funny, I always worry just before I go up that I may have become desensitized to the words I am reading and therefore unable to connect to them emotionally. It seems I have yet for this to be the case…

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Neuromuscular Disease Foundation

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