Hi Terri. The conference was excellent! I am so grateful my husband and I were able to attend. There was so much information given that it was difficult to take it all in. I am anxious for the presentations to be posted on YouTube for all of us to see. I encourage others to attend future conferences if possible.

One of the overriding thoughts that we picked up on was how much the experts don’t know. No solid consensus on treatment strategies, who to treat, when to treat, and the overall risks of treatment. But there are a couple of treatments on the horizon which show promise, including nitric oxide inhalation and phage therapy. Hopefully both will continue in development so we have better options for care.

One observation I made is that the experts in the room were the most humble and sincere health care professionals I have encountered. I spent my entire career in this arena and was extremely impressed by the sincerity and honesty in their communication and approach. They are working hard to provide the best care possible and to find better strategies to help us manage our diseases.

And I have to give kudos to this Mayo Connect online forum. The mentors as well as patients are so knowledgeable and willing to share. Nearly everything discussed at the conference has been addressed in various threads on this site. Thank you to all who provide input and guidance, especially to you Terri!