Sometimes I like to wait until I’ve more fully processed my thoughts and feelings about something before writing a blog post. And other times, I blog about something to more fully understand how I feel and where I stand on something. This is one of those times.
Yesterday I spent an entire day from 9am to 6:30pm sitting in a small lecture hall (which appeared to have been cryogenically frozen since 1979) at Beuth Hochschelu für Technik Berlin aka the University of Applied Sciences. I was there for the GNE Myopathy (the new name for HIBM) Consortium. Virtually every scientist/researcher who is working directly on HIBM or indirectly on neuromuscular diseases, gene therapies or metabolic treatments was there.