Hi Charlie1, I attended the EDNF conference many years ago as soon as I diagnosed myself! Then I spoke at the next one, two years later. I loved speaking, and meeting everyone! Sadly, the next year I was slated to speak, but pointed out that on the front page of their website they have an article (“So you think you may have EDS?”) that instructs patients not to see optometrists! What?! I chatted with them about it, and tried to explain my thoughts about the important role that optometrists and/or therapeutic optometrists played for all patients with connective tissue disorders. So although I was a volunteer and primary author for their “Ophthalmology MRG” for EDS patients and was scheduled to speak, they did not want to remove that statement. That just seemed kind of nuts to me… I’m not sure why anyone would throw an entire profession under the bus! (ouch) We sort of mutually agreed that I would not speak at the next convention, and it has been a rough relationship since then. One reason I started this forum was because EDNF’s “Inspire” forum immediately removed a thread that someone began asking if I could be invited to speak at EDNF because of my current research. I remember the posts quickly grew over 60, then Inspire erased the thread. Shortly thereafter, they removed all of my other posts. I’ve never spoken publicly about this before, but frankly, it still hurts, and I still don’t understand it. I had always thought we were all in this together to help each other… Sadly, I no longer believe this is true, and I just can’t get excited about the EDNF conference. 🙁 Please let us know how it goes if you make it, and please say ‘hello’ to the patients for me, if you can! I’ll continue working full speed ahead! Hugs… Diana